Where’s Whoopsie #20: Snow Wrist

Career lessons for the chronically ill:

  1. Write out your routine in your planner, including basic self-care essentials like physical therapy and tracking water intake and medications, alongside your work deadlines. It’s a nice little shot of dopamine to cross off basic self-care tasks in your planner, and it helps with managing energy levels at work.
  2. But, write all appointments in pencil because life is unpredictable. Sometimes you will, for instance, have to reshuffle an entire week’s predictable routine of physical therapy, actual therapy, meals and the like to attend a beneficial career training. It helps if you can erase to adapt.
  3. If and when you willingly disrupt your usual daily work routine to attend an onsite continuing education training that will likely make you more desirable to positive unpredictabilities such as career advancement in the future, suck it up and ask to take notes on a laptop. Planners can be written out by hand. Course notes cannot. DO NOT try to take notes by hand with a pen for two hours. It can – and will – destroy your wrists.
  4. If you ignore the advice in #3 above, at least do not further compound the problem by then attempting to write a full blog post within 48 hours of failing at the above.

I am guilty of #3 this week, and my wrists and hands are screaming at me for it. I will attempt to take my own advice and not also be guilty of #4. Full blog posts will resume as soon as my joints have forgiven me for thinking I could still take hand-written notes this far along in a progressive diagnosis. I couldn’t take notes by hand even back when I was still in undergrad. I don’t know why I forgot that fact during professional training this week?

In the meantime, have a picture of Ehlers-Danlos Syndrome. It is, after all, the reason (alongside Rejection Sensitive Dysphoria and a bully-in-my-brain that still feels toxic shame over asking for accommodations like using a computer instead of just taking hand-written notes like everyone else. The Evil Queen has nothing on the bully in my own brain.) I should have just said I can’t handle hand-written note taking, even if the training did take place over a “working lunch” and most people were capable of balancing food in one hand and a notebook and pen in the other. I didn’t. Because toxic shame sucks…

See you all when I’m finished paying for that lack of self-advocacy. (The artwork, for anyone wondering, was created before the aforementioned overdoing it.)

EDS_WheresWhoopsie - Copy
<Image> The Evil Queen staring into her magic mirror. Magic mirror asks her whether she means the age a body looks or the age a body feels when she says “fairest,” as that distinction will affect its answer. In the second panel, a zebra’s ears are burning. The zebra wonders if it means someone is thinking about them or if it’s just a new symptom. <Image Text>: Ehlers-Danlos Syndrome: when your skin is as fair as Snow White, but the pain turns you into Grumpy Dwarf!

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

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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.

Continue reading “Improv #14: Sing the Moment”

Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts

First, for those wondering. The bad news is that I don’t have a new job quite yet. The good news is that that is because the interview process keeps getting longer each time I go through it. I’m not finished with it yet, but I’m also not out of the running yet, either. There are more stages than I expected. I’ll be making that longer commute at least one more time before I can determine if I’ll be making it permanent.

I’ll use that “at least one more time” as a chance to gather more data for my current hypothesis that one particular section of the subway line that I would need to take as part of that new commute truly has a higher likelihood of entertainment value than the earlier sections of the same line that I used to take daily. I find that, including this post, I have now written about the actions of my fellow passengers – and/or other ads and experienced events – five(!) times. These points of data make a beautiful line (bonus points if you are now singing that song along with me), and, for a would-be daily rider who is also a data analyst, a beautiful new series for my blog. I’m retroactively subtitling the previous four posts about commuting “Subway Sociology” entries #1#2, #3 and #4.

One hypothesis is that this more-northerly-than-I-previously-commuted section of the line just has more interesting passengers in general. The null hypothesis, in turn, is instead that I have just needed more distraction from my own brain while riding this particular section of the subway – and thus have been more inclined to notice the fascinating actions of my fellow passengers while riding the rails – than while making other trips. I’ll need more data to truly determine, but, either way, my fifth unofficial/first official foray into subway sociology was a welcome distraction during what would otherwise have been a solid hour for the bully-in-my-brain to psych me out before my last interview.

It takes a lot of confidence to do anything other than stick headphones in your ear and avoid eye contact with fellow passengers on a subway. It takes a unique level of confidence to do double duty during your commute and incorporate your daily workout into it as well. Yet, one of my fellow passengers on the way to my last interview had the brass balls – er, brass bars – to do just that.

Continue reading “Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts”

Written on the Prophetic Plates?

This Is Why We Can't Have Nice Things
<Image>: Smug cat on a ledge with a broken vase on the floor. <Text>: This is why we can’t have nice things.

My Partner and I are going to a game night tonight hosted by someone I met through an ADHD support group. So, of course, I had a dream that the hosts kept serving me party food on real plates, and I kept progressively dropping them. I desperately tried to explain, “Please stop giving me nice things. I drop things constantly,” but somehow the china I was handed just kept getting progressively finer…

On the one hand, I hope that doesn’t become a self-fulfilling prophecy. It is wet and slippery out today. I also didn’t sleep well – no thanks to that dream.  And, it would be nice to actually make “friends” with people before I break something (of theirs or of mine) in front of them. On the other hand, if there will ever be a household where, “I know I’m clumsy, but I forgot to put my plate down before my hands got too tired” might actually make for an understandable explanation, perhaps it would be a fellow neurodiverse household?

I’m sure this dream has nothing at all to do with the fact that I read the Ehlers-Danlos Society’s “Mental Health Care Toolbox” on Facebook yesterday or the fact that it noted that people with EDS and HSD have a higher incidence of anxiety, depression, and ADHD. Or the fact that I have fallen down in public places twice recently. Nothing at all…

I'm Not Clumsy. It's Just That The Floor Hates Me, The Tables And Chairs Are Bullie And The Wall Gets In The Way T-Shirt
<Image text>: I’m not clumsy. It’s just the floor hates me, the tables and chairs are bullies, and the wall gets in the way.

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

 

Improv #12: Funny You Should Mention That…

memorial quotes for son | Share Inspirational Picture Quotes About Life - On Facebook
Image text: “Pretending to be normal, doing your best to act like you’re ok, day after day, week after week, month after month, it’s just so exhausting” over a woman crying.

For anyone wondering, the Thanksgiving turkey turned out great. Cooking a turkey is like cooking a whole chicken. If you want to practice before next year’s big day, cook whole chickens. Then, do the same thing on Turkey Day for about 3-4 times as long. (Also, turkey enchilada stew and buffalo turkey sandwiches feel much more like a “change” from a week of all-turkey, all-the-time than the standard turkey pot pie and stews that are usually recommended.)

Unfortunately, my Partner sent our only photos to his parents when he last spoke to them. Now there’s a remote chance they could someday identify me as the author of this blog if I recycled those pictures. I used an herbed-butter rub and baked the bird with roasted vegetables for aromatics. The pictures, through the magic of Google image search, could theoretically be vaguely identifiable. Every picture of the same natural feature looks about the same. (I did some digging to prove that to myself before posting Iceland pics last year.) As long as I pick out different photos for his parents and my blog, I can share travel photos here and still keep my worlds separate. But, I can never share the same photos, or my worlds might collide, right?

Not really. All Thanksgiving turkeys also look about the same, so there’s nothing truly stopping me from posting the same pictures here except my ingrained need to keep my worlds separate. There’s nothing except my ingrained need to control to whom and in what situations I reveal just how not normal I am. I am still masking in most of my life, and, though it sucks, I don’t think I’d know how to fully unmask in daily life if I tried. Unmasking hasn’t been safe in childhood, in my workplace and in advocating for my neurodiverse sibling within a regressive, systemically abusive state.

Continue reading “Improv #12: Funny You Should Mention That…”

Where’s Whoopsie #16: Build Me Up, Butterball

“For pounds up to nine,” Peapod’s flat fee’s pretty fine
But they lied, they substituted and then (Ba-dah-dah)
Showed up from the store, a turkey fed many times more
It’s not them, will I let us down in brine? (Hey, hey, hey)

Maybe, baby, try to find (Hey, hey, hey)
Dethaw time and I’ll make us happy (Hey, hey, hey)
I’ll be home, I’ll be beside the stove waiting on food
Ooh, ooh

Why do you build me up (Build me up)
Butterball, baby
Just to give me dread? (Give me dread)
And mess with my head?
And then, worst of all (Worst of all)
The bully calls, baby
“You can’t keep us fed” (Keep us fed)
But it’s quite misled
I trust us (I trust us)
And the Internet darling
On prep, I will soon make a start
So build me up (Build me up)
Butterball, don’t break my heart

It’s true, we’re just two, but we could eat for many days more
If you’d just turn out right (Ba-dah-dah)
Although you’re quite rare, I am willing to dare just to gorge
Oh, let me feed us so! (Hey, hey, hey)

Maybe, baby, try to find (Hey, hey, hey)
Cooking time and I’ll make us happy (Hey, hey, hey)
I’ll be home, I’ll be beside the stove waiting to chew
Ooh, ooh

Why do you build me up (Build me up)
Butterball, baby
Just to lay breast down? (Lay breast down)
On plates all round
And then, worst of all (Worst of all)
The sides and all, baby
Why can’t you be alone (be alone)?
But I’ll make them too
I’ll eat you (I’ll eat you)
And everything, darling
Of all, I’ll eat more than my part
If you build me up (Build me up)
Butterball, don’t break my heart

I-I-I want you on Thanksgiving Day, baby
That’s why you were put in our cart
So build me up (Build me up)
Butterball, don’t break my heart

Continue reading “Where’s Whoopsie #16: Build Me Up, Butterball”

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

WorstJob
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?!

Continue reading “Remote Control”

Messages in a Bottle #8: The Right to Say “I’m Sorry”

animals_misunderstood
Image: Lyrics from The Animals “Don’t Let Me Be Misunderstood.” Full song playable on Youtube here.

On three separate occasions recently, I have found myself writing about apologies. I wrote about how my Partner always apologizes for hurting me in an argument – even when we have both said hurtful things – because he knows that wasn’t something I ever heard growing up. Then I wrote in another post how abusers never truly apologize. (Saying “I’m sorry you took it that way” doesn’t count!) Never receiving a true apology – even when I begged for anyone to understand just how badly I was hurting – is part of my personal abuse history. Heck, it’s part of my abuse present. I haven’t yet met an official from the 9th Circle of Hell who gives a damn about the hurt that has been done to my sibling and to those of us who have to deal with the guilt of not having been able to stop it. I’ve only met abusers, bullies, and officials who wanted to sweep the issue under the rug as quickly as possible.

But, there’s another side to talking about apologies that I haven’t written about until now. I haven’t written about how I was never allowed to truly apologize. I made mistakes as a kid – of course, I was a lonely, neurodiverse, traumatized kid – and I learned early on to respond to others using all my weak spots against me by trying to do the same to them before they could hurt me first. If someone had shown they’d go for my jugular, I tried to go for theirs first. (Spoiler alert: it’s actually virtually impossible to truly hurt those who are willing to do that to you, so it never did much good.) I’ve also said stupid, impulsive things just because I have ADHD, I’m hyperactive, and rejection sensitivity hurts like Hell. I’ve responded to my Partner like he was part of my past because arguing itself made me forget my present.

My current therapist would say that I didn’t really need to blame myself for the hurtful things I said to people who had a history of saying hurtful things to me, especially when there were rather large age differences and power dynamic differences. But, when I truly decided I did not want to recapitulate my own family dynamics in another generation, it felt like I had to at least try to reach out my hands. It felt like maybe the first one to show vulnerability could make the change. We were a family broken by The System, and, thus, maybe – since we hurt each other because outsiders had hurt us first – we could find our way to healing once we understood trauma dynamics.

Another spoiler alert: showing vulnerability just made going for my jugular easier. It just opened me up to another long list of all the ways I’d screwed up over the years – dating back to age 6 at least – and how all of my failings justified anything that “might” ever have happened to me. Maybe vulnerability might have worked with one family member who is no longer with us (or maybe not) – I’ll never know – but it didn’t work with one with whom I tried it.

I’ve never received a genuine apology while growing up, but I also was never given the chance to offer one, either. I wrote in a previous post about how I was upset and triggered by some things another blogger wrote about ADHD. It hit me in a lot of the “it’s okay to hurt you because you should be normal but aren’t and it’s your choice” abuse buttons. That blogger apologized. She broke the cycle. She saw that I was upset, and she cared enough to write. That really was enough for me.

I also know the legacy of my past is that – even if I try to no longer allow others to hold past mistakes for which I’ve attempted to make amends over me – I’ll hold mistakes over myself forever anyway.

I’ve written a lot about fighting internal stigma within the chronic physical, mental, or developmental illness communities, but I initially forgot to include the most important caveat when we do so:

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. 

That’s ironic, given that the very earliest journal entry I ever wrote was about the right to be forgiven. It’s likely naive and dangerous to forgive those who hurt us intentionally – they’ll take it as permission to keep doing it – but it’s cruel not to forgive those who hurt us unintentionally. It risks making us into the voice of the bully-in-someone-else’s brain. I wrote in my earliest journal entry how I didn’t want to ever be that again. My subconscious thus thinks that I should post that earliest entry to make sure that I’m always truly keeping myself honest to advocating for calling out stigma in a way that opens arms, not closes fists, since I know too well how easy it is to wield a litany of past mistakes against yourself for years.

The Messages in a Bottle blog post below is the very first homework I ever completed in my leather-bound journal in my very first twelve-week CBT course at student mental health services. It is the earliest Messages in a Bottle I will ever post unless, by some miracle, I find something buried on Dropbox that has survived transfer across literally every external hard drive in every state in which I have ever lived.

The song is by The Animals. There are a couple of their songs that hold personal meaning for me. Maybe I’ll write about the others eventually, but, per my notes, this is the one I was listening to when I wrote this first entry that I have never actually shown anyone until now.

Continue reading “Messages in a Bottle #8: The Right to Say “I’m Sorry””

Blog Awards Series #4: Mamas, Don’t Let Your Blogs Grow Up to Be About Cowboys

Anyone who ever thinks that the ADHD brain can be turned off has never had to deal with one while blind for a week. The days of wearing an eye mask on doctor’s orders did help me get more sleep than normal. It’s logical to fall asleep when it’s dark all the time anyway, but that didn’t necessarily make that sleep any less, um, “active” than my waking thoughts.

I had some bizarre dreams during my enforced lack of vision. For instance, have you ever seen those megachurches along interstate highways in the Southwest or Midwest – or just in California, period! – that look like ranches and have testosterone-laden names like “GUTS Church,” “Cowboy Church,” or “VIVE Church?” They feature boxing matches, baptisms in stock tanks, and battle-ready women’s weekends? Well, my brain created one for the horses those cowboys rode in on! It was called the Whipped Church and was led by Rev. Tacky, who preached that if parishioners were obedient to the Triple Crown in this life they’d roam free – unbridled and unwhipped – in the next. It had a food court where you could literally make hay about your faith and even a bookie onsite. (The horses, too, needed to get in on the betting action to be able to afford their “suggested” church donations.) Of course, as in many megachurches, Rev. Tacky was also known to stirrup some political diatribes alongside the entertainment!

I first assumed I should be ashamed for admitting to such a rowdy dream itself, but my Partner discovered a show called BoJack Horseman on Netflix uses a similar premise – horses running Hollywood – to satirize current events. Rather than being ashamed that my brain is so far out there as to produce that dream, I should instead probably be ashamed that my dream wasn’t quite far enough out there. I managed to somehow subconsciously mind-meld with Will Arnett and Amy Sedaris without ever having so much as received a Netflix recommendation about their show. (I actually kind of wonder how Netflix hasn’t ever suggested it? What demographic profile don’t I fit? Will I have to subvert Netflix’s impression of me by watching the show just because?)

My brain also decided it needed to write a YA dystopian novel. Full-length, with eight named characters, a beginning, middle, climax, and denouement. And, of course, because my life is ruled by trauma right now, it decided that YA novel needed main characters who were more realistically affected by mental illness and the impact of worldwide trauma – that’s what dystopia is, after all – than most dystopian fiction I’ve read. I’m pretty sure the dream was prompted by the fact that the first book on tape I listened to during my week of no vision was one of those progressive feminist novels (not YA at all) that was clearly very proud of itself for including characters that were neurodiverse, but whose characters hit me in the uncanny valley about their mental illness portrayal. I couldn’t figure out why the book unnerved me so much initially, but my Partner agreed with my assessment of it after listening for a bit. He’s becoming a connoisseur of the trauma experience himself, sadly.

My subconscious apparently felt the need to continue considering the problem and ultimately determined that the characters felt like DSM-V checklists of their supposed diagnoses rather than people. They displayed all of the symptoms on the diagnostic questionnaire, but with none of the messy bleed-over between diagnoses or unique expressions of those symptoms built upon their own personality that have characterized my experiences and most of what I’ve read from other bloggers. It felt like the author did a lot of research, but she had no lived experience to make her symptom portrayals convincing. My brain is still so stuck on its soapbox about how we further stigmatize ourselves within the mental illness community by claiming some diagnoses are worse than others or that a person is better off if they are “high-functioning” vs. “low-functioning” that it had to create an entire book in my brain about the impact of within-group stigma in a future world with even more inequitable and ineffective mental health care to further prove its point.

I’d roll my eyes at myself for being that preachy in my dreams – literally and satirically – but I had my first generic PTSD nightmare last night since the spate of randomness. Even an entire YA “novel” about a terrifying possible future is a refreshing change from a replay of my real past. I got to at least direct the terrible things happening to my characters instead of having to (re)live them myself as the captive actor. I’ll happily stay diligent about wearing my eye mask for an hour daily to rest my eyes – my neuro-ophthalmologist recommended it after reviewing guidelines for eye care with Ehlers-Danlos – if it will continue to bore my brain into re-deriving better comedians’ ideas or playing novel writing instead of endless nightmares. My brain has already demonstrated that it can write trauma from re-deriving my own story. Anything my brain creates that isn’t a variation on my own trauma is a treat.

That said, my answers to Mackenzie’s questions prove why, nightmares or not, I would rather trust my own brain to write my story than anyone else’s.

Today’s questions courtesy of Life with an Illness:

Continue reading “Blog Awards Series #4: Mamas, Don’t Let Your Blogs Grow Up to Be About Cowboys”