Shooting for the Spoons

A lot of popular wisdom is rather dubious when actually examined. For instance, the common career advice to, “Shoot for the moon. If you miss, you will still land among the stars.” Unless the flat-Earthers know something I really don’t, even good old Sol is much further away from us than the moon…

Another bit of dubious popular wisdom I hear regularly from would-be experts (who have usually never heard of most of my diagnoses before) is, “An apple a day keeps the doctor away.” I certainly am careful with my diet, but an apple a day does not keep the doctor away for me. In fact, following the common wisdom for most of my working life to eat as naturally as possible on business trips to minimize GI symptoms has been about the worst possible choice for me. On travel per diem – and thus not responsible for remembering expiration dates for the fresh veggies and fruit that I so often forget in my fridge for weeks until they spoil – I would load up on all of the fresh fruit in an attempt to keep the gastroenterologist away. And, yet, I always felt like my IBS symptoms were worse on business trips anyway. The inevitable refrain from the “apple a day folks” – and many of the doctors that were supposedly being kept away – was that it was just “my anxiety” exacerbating my symptoms. So, I both had to plan for disaster each time and for the bully-in-my-brain to refrain how it was my fault since I couldn’t just “relax.”

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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.

Crushing it

Things that went through my mind in the process of composing this week’s blog post:

  1. To Partner: “We need more of those crushable baking potato chips that are not potato chips…”
  2. Hey, there is an entire site devoted to logging prior weather in the U.S.! Someone anticipated the deep-seated need of the ADHD community for a site to fact check them when they write, “Even though it seems hard to believe when we hit the 70s this week, we were in the 20s just last week” and they can’t perceive time well enough to remember if it really was “just last week” – or only felt like it.
  3. Good. My Partner added bread crumbs to our order.
  4. That historical weather site was probably intended for historical fiction. Solipsism is great in theory, but the idea that my mind shapes all of reality falls apart immediately upon being reminded that there is (still) no site to determine the actual word I am looking for from the random descriptions of my ADHD/brain-fogged mind. If the Internet were built around me, there would be. Ipso facto, my mind is not the only one that exists.
  5. To Partner: “You are right that if we order bread crumbs instead of making them, then they are not ‘crushable’ but ‘already crushed.’ Isn’t tense relative to the frame of reference though? By the frame of reference of the bread crumbs, the description is ‘already crushed.’ Potato chips don’t come pre-crushed. So, didn’t I use the correct tense for their frame of reference?”
  6. The moment an AI can obtain ‘bread crumbs’ from ‘crushable baking potato chips that are not potato chips’ – regardless of tense – is probably the moment we achieve the Singularity.
  7. This list of random thoughts is about to be longer than the rest of the blog post.
  8. This is also why my Partner and I crush games like Taboo and Heads Up. Maybe I should just go with that and make this post about how effective communication in relationships becomes even more convoluted with brain fog?
  9. I should still explain why I was originally looking up the weather last week to fact check myself, even though it seems kind of anti-climactic now to state that chronic illness and ADHD can lead to word-finding difficulties when I’ve clearly shown it.
  10. Wait, my original example works just as well as an example of effective communication with chronic illness! I can just relay the original conversation from last week’s cold snap that was intended to become a polished blog post verbatim! Crushing it.

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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.

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Striped Girls Can Jump?

Reminds me of a few people I know!!
<Image Text>: “Your flexibility amazes me. How do you get your foot in your mouth and your head up your ass all at the same time?”

People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”

My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.

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Subway Sociology #3: Of Subways and Cigarettes…

CW: mentions of an attempted robbery on New Year’s Eve that did not result in any injuries or financial loss. Mentions of past acute traumas, including a threatened mass shooting, that I have experienced, fortunately also without injury.

Does acute trauma add to the mental trauma load if you’ve already experienced the 9th Circle of Hell? I know that every experience of abuse – past and present – in the 9th Circle of Hell has been one more piece removed from the fragile Jenga tower of my mental health. I know that 9th Circle of Hell trauma compounds, but should I count non-9th Circle of Hell trauma? Does something that I would definitely call traumatic if it happened to others – but that will never take up residence in my nightmares because the price of that mental real estate was set too high by the 9th Circle of Hell – count as part of my “trauma narrative?”

I read a post recently from a blogger with a severe trauma history who witnessed a guy open-carrying a gun in a coffee shop. She was triggered, but she had her coffee there anyway. She had to ask if she should have left or if she was overreacting. Go through enough childhood trauma and your perspectives can get very skewed on things. I commented that the statistics on mass shootings in the U.S suggest that it is wise to leave such situations as soon as it is safe, and maybe even to hang out down the block to call 911 if shots are heard. I almost added that I am very wary of guns “even though guns aren’t a part of my trauma history.” Then I stopped and realized I might be being an idiot. I do have a prior scary history with guns, though I don’t think it is contributing to my PTSD symptoms. I briefly considered writing a future post about whether it is possible to be “triggered” by something while thinking you were unaffected by an event. Then I promptly forgot about it, because ADHD, until my Partner was on the receiving end of an attempted robbery on New Year’s Eve.

We both recovered from the fear within hours, but I wonder – given that other post – if that’s completely accurate, or if we’re just a bit too numbed from the 9th Circle of Hell to respond normally to things that should shake us up for a few days. The robbery wasn’t successful – or I guess very successful – but threats were involved. My Partner did take them seriously until he was able to get into a place with others around to not take them seriously anymore. It was a scary situation while it was happening, even if it ended ok. What is considered “normal” for recovering from acute scares – as that other blogger similarly asked – if your baseline isn’t Hell?

We were heading home from dinner on the subway. Our subway system isn’t accessible in many places. In some places, it’s only “accessible” if you get off at a stop on a line close by, take an elevator, and walk through an underground ramp at a gentle grade that can handle a wheelchair at least a block to the other station. The alternative to walking a block is to have to climb what I unaffectionately refer to as “Stairs of Death.”

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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.

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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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Top Ten Things I Hate About Top Ten Posts

I went away to a place that was not the 9th Circle of Hell this past long weekend with my partner. It was just a long-weekend getaway, and – given that my Partner had literally been to Hell the week before – it doesn’t quite imply everything is fine. However, it was enough of a mental reset for me that I don’t want to think or write about that other place if I can avoid it for a week.

I wasn’t sure at first what else to write about. The 9th Circle of Hell and the soon-to-be-introduced-on-my-blog replacement for the Bedbug Motel still occupy entirely too much of my brain space. It was harder at first to not think of the 9th Circle of Hell than even to not think of an elephant. Until suddenly, I realized…

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Where’s Whoopsie #14: Where’s it Hurt?

Traveling and being unwilling to bring anything I have actually invested time and effort in with me to Hell means I haven’t posted a Where’s Whoopsie since July! I suppose I could have posted some of my decidedly not-safe-for-work swear word drawings that I relied upon instead of geometric patterns to express my feelings during my time in the 9th Circle of Hell, but even I don’t care to see them, though swearing out loud feels like a great way of reminding myself I’m not in that place anymore. I’m fairly confident some of those swear words leaked into my blog posts anyway over the past few months.

However, I feel like posting something just because I need to mentally distract myself, and typing hurts physically even if it might help mentally. Thus, I’m using the fall back of pretty pictures to make up for a decidedly lackluster pain-fogged blog post. Something appears to be going “around,” and proximity to sick people has resulted in the inevitable acute illness coupled with massive amounts of all-over pain. I would dearly love to understand how bacteria and/or viruses exacerbate joint problems caused by defects in collagen, but they certainly seem to. Acute illness seems to have triggered a truly agonizing all-over EDS joint-pain flare. I’m exhausted but on my second night of painsomnia. The next time someone compares their cold to my chronic illness, I’m going to remind them that we get all the same bugs, then have to deal with another week of our normal symptoms being on overdrive to top it off.

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