Archive for the ‘Quix_Tic Himself’ Category


All My Old Haunts…


I had a poetic opening, but that part of my brain has been lost to logistics.

It was a hard weekend — not without highlights, but they were diffuse, like a bright lamp in thick, close fog. You didn’t know you were upon them until they’d already passed. You didn’t know when or whether more would follow. And between them, it was easy to lose direction.

I wouldn’t have seen the news of the passing of a dear friend and colleague if I hadn’t left a certain app on my phone some months ago, because it had been the easiest way to connect with my mom while she stayed with my caregivee. Less than two weeks ago, we placed my charge into a memory care facility; although I visit almost daily, my era as a full-time caregiver has ended.

I’d been trying to gather my thoughts on what to write, how the move was upside down — straightforward emotions and exhausting logistics — how I’d intended to start this grand phase of healing with eyes and heart wide open but so far have struggled to get even a good night’s sleep (let alone a good perspective).

But here we are. Less than two weeks into my bloody, fumbling, desperate heal, it’s time to pack a bag, board a plane, and mourn one of the best people you could meet.

I started writing his eulogy immediately, a short one (because nothing else will do for a person who has done so much) about how he’d barely known me, three years in the same office, ended ten years back, and yet this man of accomplishment and knowledge had checked on me more than any other from that time. He’d always asked about my caregivee, even before the dementia signs, as if he’d seen known our paths were destined to merge.

Last year, he talked to another good friend, who had moved to the area and was struggling to find a job. Her career trajectory was only tangential from his, and he had only my reference to go on, and yet he gave his time and focused insight freely.

I had intended to reconnect with him, and with everyone I will recognize at his funeral, some time next year. Probably a road trip. Maybe a happy hour and a networking lunch. I wanted to see them all through new eyes, and see how they see me. Most of them, it’s been ten years. I have a devastating fear that some will not get word in time, but maybe that’s a symbol of one’s impact: that it’s simply impossible to reach everyone in time before one’s funeral.

The timing is eerie. I’m not sure I could have attended a funeral one day sooner after The Big Move. And my departed friend just re-added me on Facebook a few days ago (he had a propensity to forget passwords and, inevitably, create new profiles because he loved to connect so much).

I was supposed to have a plan, an agenda, some sense of direction and questions I wanted to ask, some notion of how I was going to connect my past as an activist with my present as a caregiver and my future as a contributing member of society. What do I want to be when I grow up? I don’t know, what does your movement want people to grow up to become?

I’m going in empty-handed, though. Just a business card and an openness to follow the experience wherever it takes me. There are sure to be stories.

He would have wanted it that way.

Now here’s an adroitly relevant video from St. Vincent:


Storytelling as Self-Articulation


I could probably wax philosophic for a thousand pages on the ways that fiction can help us understand, articulate, and interpret our realities, but this fun little example happened the other day so all you get is a sample anecdote:

My beloved and I have been watching Farscape (a fun Australian sci-fi set on the other side of the galaxy), and after my weekend off we sat down to an episode called “Through the Looking Glass”. In it, the spaceship of the main cast makes an error exceeding light speed and splits into four parallel dimensions: besides the “normal” dimension, three variations appear, tinted by colors. In the red dimension, everything is unsteady and nauseating (hindering the body); in the blue dimension, loud noise disorients (hindering concentration and communication); and in the yellow dimension, everything is inexplicably hilarious (even if it shouldn’t be).

The parallels for my caregivee became apparent when he came in (mid-episode) to tell me about all the jokes he’d pulled over the weekend, such as telling the cashier at our favorite barbeque joint that I was absent because I “got mixed up with some Arab girls and ended up in jail.” But he reassured her that he’d taken care of it and I was out now.

His red days are the days when he can’t keep his balance, his blue days are when his memory is especially confused or his aphasia especially pronounced, but last Sunday…

Sunday was a yellow day.



Snapshot: Hi Again, Joan.


JoanWhen you’ve been lurking around ‪#‎OKCupid‬ as long as I have, you develop this strange digital neighborhood of familiar faces: not close enough to be a “community” or send Christmas cards, but people you know, people you saw on the street that one time but didn’t approach, people you always wanted to message but didn’t, people who message you often but with no rhyme or reason. And sometimes, there are even people who live on the other side of the world, have never messaged you, have never made contact in any way, and yet drop by regularly enough that you start to ascribe them a personality, maybe even a story.

Joan here has been my unspoken pen pal for as long as OKC has shown you your visitors (‪#‎backinmyday‬ they called them “Stalkers”, but it was okay because that’s how you’d be described if you visited their profile…). She still has the same profile pic. I haven’t looked at her profile in 5+ years, easily, but she still comes around several times a year to see what’s shaking, maybe track my poly adventures, maybe ogle my newer pics.

It’s quite possible that Joan has a long list of favorites and she cycles through them constantly, obsessively but without objective, and there are so many she only reaches me every few months. Or maybe she only cycles through when she’s lonely, a relationship has gone sour, and she’s hoping against hope to make a connection with one of these fine fellows, if only ONE of them would reach out first (but Joan wouldn’t, couldn’t, be first).

But… I don’t know… I like to think Joan and I have something special.

Maybe we’ve moved beyond that youthful transatlatic crush, and her visits express only the familiar nod of experience. There aren’t many profiles as old as ours still around (let alone profile pics! We get it, Joan, you’re a tiger…). We’re the old guard. We knew what OKC was like when nobody was poly, but those who were COMMITTED to it. Not like kids these days.

Still I never message her. We’re pretty much beyond the stage where words even matter, aren’t we? This is the hallway nod of the internet. “S’up.” Not a question. An affirmation.

“I see you.”

Hi again, Joan.

I see you, too.


Snapshot: Gender and Attraction


I was asked by a male-identified person about the lack of Y-chromosomes in my current polycule. What follows is the bulk of my response, posted here for posterity or whatever:

My gender identity is cisbastard. I got that Y chromosome you were talking about (as far as I know) and was designated-male-at-birth and I’ve gotten by more or less okay like that (being tall, surly, and able to draw probably spared me from a disproportionate number of ass-kickings as a preteen, but I’m okay with that). What I really got by without, though, was a traditional father figure enforcing masculinity. I had a loving grandfather-figure and an evil step-father and a father whose face I knew but not well and that was about it. Their respective gravities, along with other privileges and talents, allowed me to slip through the cracks of gender enforcement for the most part. The further I got away from any sort of strong relationship with masculinity, the less I needed one.

I’ve been attracted to women my whole life. I never had a cooties phase. I tried to be friends with everyone, but as I got older, I found that men were the hardest to make and keep as friends. I just didn’t get them, by and large. In recent years, I figured out that lacking a personal relationship with masculinity has made it distasteful to me, but in recognizing that, I’ve been better able to unpack gender stuff in my attractions and see people as people regardless of genitalia. I still shy away from flaunted masculinity in friends, sex, and romance, but because that is so common and so fundamental to how men are taught to function, it makes me much more attracted to men who don’t exhibit gendered power dynamics. In general, I find people attractive for their feminine or gender-neutral traits, and the brighter these outshine their masculine traits, the stronger is that attraction.

I suppose I should state here that I have a definition of “masculinity” that skews negative but also narrow (however common). I associate it with power, dominance, aggression, taking up a lot of space, anger over compassion, shouting over listening, etc. etc. etc. I have yet to see someone present me with a so-called “masculine” trait that I couldn’t either re-interpret as gender-neutral or feminine or otherwise find harmful to all parties involved. So if I say that I don’t find someone “masculine”, it is meant as a compliment, and does not necessarily correlate to how that person genders their own positive traits.


Social Media, Self-harm, and the Gambler’s Ruin


In all of my totes-academic 2nd- and 3rd-hand reading, Michael Crichton once introduced me to the concept of “The Gambler’s Ruin”, sort of a piece of chaos theory that states winning streaks and losing streaks are inevitable, and each will get longer and more impactful the longer a person gambles. Accordingly, the secret to good gambling is not really how you gamble or how you bet, it’s knowing when to quit (i.e., near the end of a hot streak).

Feels a lot like Social Media, doesn’t it? I’ve been a power user for years, and I’ve known that there are good days and bad days and bad weeks and bad years… I’ve known that sometimes the most important support I can get is the support to take some time off the Internet (especially the social parts of it), especially when it starts to feel like I can’t catch a break. I’ve also seen the “winning streaks”, the days where the stars and pixels align and I am inundated with all the support and affirmation and cute animal pics I could have ever asked of the Internet just when I need them most.

Of course, the more I win, the more I want to win, and sure enough, I don’t get out in time.

The other day, I pointed out the parallels between social media and The Gambler’s Ruin to a lover who happens to be a counselor, and she backed up my half-joke with a serious factoid: social media has been proven to stimulate dopamine in the same way as does gambling.

I can’t think of a clever phrase that encapsulates the correlation (“The Facebook Ruin?” “The Gambler’s Timeline?”), but clearly this is A THING.

I’m also thinking about how susceptible I’ve become to negativity in activism. I’m never in on the victories because my circumstances prevent a high enough level of participation at this time, but boy am I in on the losses and the squabbles along the way. I’ve had to start saying that activism is self-harm for me in my current context (caregiving). The more I think about it, the more I think it’s just online activism that is self-harm. I can convene with interested parties, help people network, educate on important issues, and even attend a rally or something and not feel worse for it. It’s just the link sharing and flame wars that get me into heart-achy territory.

I guess online activism (especially without any offline support or involvement) is also susceptible to The Gambler’s Ruin, and it is a game at which I am particularly bad.

In accordance with my philosophy of Imperfectionism, I am posting this as soon as it is finished, with almost no revision, second-guessing, or elaboration of my quirky sense of logic. The Michael Crichton book in question was The Lost World, which is basically a book on logic and an errata on Jurassic Park disguised as an unnecessary (and highly profitable) sequel. It’s nothing like the movie, and therefor I highly recommend it.


PSA: It’s Okay to Laugh


[I drafted this a few weeks back, tweaked it a little, and shared it with a trusted source who thought it was even better than I did when I drafted it. I feel like it needs a lot more work than I am willing to give it, so in the spirit of Imperfectionism, I’m just going to post it as is.]

If you think about it, White Guilt is pretty damn hilarious.

From the stance of marginalized people, the notion that a visible status and some restless pushback can disrupt the individuals with power better than generations of ardent resistance must cause more than a couple of stifled giggles (in the head-shaking sense that one must laugh so as not to cry).

From the stance of people who believe in the power structures that exist, that poor people deserve to starve and people of wealth deserve to have their personal security regarded as a public matter and that no trained cop has ever, ever shot the wrong kid for the wrong reason, the idea that the people who hold that power should feel guilty is a notion worthy of derision.

From the pragmatic, those who perhaps know that systems are unequal but are just trying to get by and don’t make it a personal mission, the weight of oppression is optional and emotional, and how ever is guilt going to get the children fed and the roads paved? [snicker]

From the bleeding hearts, we vocal white liberals, White Guilt is a trap that either catches oneself (evoking nervous laughter) or gives chase unceasingly (evoking smug laughter until we fall and it inevitably catches us).

White Guilt finally caught up with me last year, when the strain of caregiving and other personal struggles forced me to pull away from activism; I was left alone to cross-reference the intersections of my white privilege (which I more or less handle sanely) and my male privilege (which I can hardly say I handle at all…) and started seeing very uncomfortable patterns in my dating and, for lack of a better term, “ally” behaviors.

The greatest laugh of White Guilt is that it laughs at you when it takes away your sense of humor.

For the thousands of privileged people on the Internet clamoring so desperately to be accepted as “one of the good ones”, the easiest gesture to make is to call out others’ bad behavior without ever looking within. Denounce the racist fraternities, but not the academic culture that overlooked them for generations. Stop following whatever privileged writer has been newly declared “problematic” without taking the time to re-examine why you loved them in the first place. Swoop in on other people’s social media, declare their privilege is showing and they should read some bell hooks, then swoop out before they ask for clarification (or specifics).

People of color have no obligation to educate white folks, and I’m “one of the good ones”, so that kind of applies to me too! 

Are we sure we’re not the subject of someone’s satire? Because it seems pretty ridiculous…

The truth is, with the right perspective, just about anything can be funny. Those of us who want to be aware of our privilege should take extra care not to laugh at the expense of those less fortunate than ourselves, but that does not mean the paradigm itself is not rife with comedic potential. It’s a matter of getting the right joke.

Personally, I’ve been at this a long time, but I still struggle at times to keep perspective. I should know by now that any time I can’t laugh at SOMETHING, I’m probably not in a healthy mindset. And I’m so used to looking at the big picture, the intersections, the gravitas of everything touching upon everything else, that I actually have to encourage myself to seek out the humor in mundane moments.

As a caregiver, there are plenty of these moments, where I only take myself and my situation seriously at my own peril.

I often find myself tweeting ludicrous scenarios from my caregiving adventures. I do so partly because I use my hashtag as an archive, so that one day I might come back and make sense of how these years reshape me. I do so partly because moments are poignant, and a moment recognized is a moment when I stood still and looked around.

I also do so to share a laugh.

A few people have told me that my social circle has likely evaporated because people don’t know how to interact or relate with me as a caregiver. For such persons, I might be tempted to say their interactions were never stellar to begin with, and my expectations were not high (I was never comfortable on pedestals — especially when my loved ones were left off — nor of casual enmity, especially by Brutuses who never bothered to declare animosity until I was already under attack).

But really, this waxing cantankerous comes more from the fact that I have been telling people all along how to interact with me, to no avail. I was an over-communicator before all this started, yet people consistently hesitate to ask even basic questions. I would hold private and public events regularly to stay connected, until attendance tapered off and I was just spinning my wheels. I posted thorough, thought-out lists of how my needs could be met best, and they got a handful of likes and no substantive results.

And I shared (and continue to share) poignant moments along the way. Because I am now an unfamiliar entity, my posts are approached with trepidation, every word taken most severely, and all humor stripped away because it might be better to be silent than to be insensitive. My family chastened me once for calling my caregivee “the old man”, even though it was a) factual, b) protected his privacy, and c) only used in humorous posts. Not long ago, I shared a slice-of-life moment that made me smile, but got two frowny-faces on Facebook. Anyone else’s roommate starts fussing over the “correct” flavor of ice cream and it’s a silly laugh to be shared; it happens in my house and I end up feeling like I’m bringing people down for having shared it.

Let me be clear: I cannot laugh at the person for whom I care. He is not weak, ridiculous, pathetic, or contemptible. He is my personal hero, and he is sick. But because of his illness, he sometimes says or does idiosyncratic things. That’s amusing.

To not laugh at funny situations (again, in good nature) would be to infantalize him.

Laughing can also represent acceptance, that however well or not things work out, we have done our best in a situation and we have no significant regrets. To not laugh at our missed opportunities is to acknowledge that we weren’t doing the best we could. That we have something for which to actually feel guilty.

I can’t really speak to when or how it’s appropriate to laugh at White Guilt (I just dashed this off in the wee hours when I should have been sleeping), but I can tell you about my life and my personal experience. I can tell you that I share moments that touch me, but not so much the ones that scare me. I announce changes in condition (for the sake of my family, who will always opt for the least interactive communication available, ever since we used to shout across our series of rather small houses for one another because stepping into another room was SUCH a chore), but only when it feels safe to do so.

Everything else, I’m at least trying to be a little funny, because humor helps me cope and sharing humor helps me not feel alone. I won’t dare laugh at something I could change, but I’d like to get to a point where I could laugh at anything I couldn’t.

So for future reference, any time you think I’m trying to be funny about my life as a caregiver, please join in the laugh. And if, some day, I return to activism and you think the same thing about something I post with political implications, try to find the humor in it (even if it’s just how ridiculous I am for trying).


PSA: Hyper-vigilance Kinda Sucks the Life Out of You


Caregiving fosters hyper-vigilance, which fosters a normal state of negativity because you’re always thinking out worst-case scenarios. It’s taken me three years to realize this. It’s devastated my once-positive perspective during years that were already hard many times over. It’s cost me friendships. It’s cost me hope. It’s cost me love. I can’t imagine how much it’s hurt the perspective of people who only (or primarily) know me online.

Now that I’m aware of it, I can work on balancing things out, but that doesn’t mean it can’t still get worse. Combine this with ambivalence about Facebook profiles on the longer side of a decade old, and most days, I can’t tell the difference between friends naturally drifting away due to life circumstances, friends who merely flake out or stop using social media, people who have written me off because they think I’m a flake (sorry, buy Maybes are the best I can manage for the vast majority of impersonal event invitations), and people who hate me.

Leap in logic? Sure. Something I can stop or reverse at this point? I doubt it. I’m doing everything I can to take care of myself, up to and including therapy and changing how I define friendship and purpose. Four months ago, I had to put an all-stop on activism because there were too many hard truths coming from the outside world to keep up with the hard truths afoot in my own home. (If you see me post something even remotely activist-y, you should know that I’m hurting myself doing it

I used to post often about what my needs would be as a caregiver so I could keep the feeling that I am a positive, accepted, and respected human being. I didn’t stop posting about those needs because I stopped needing them, I stopped posting because no one was listening. Why? I dunno (see above).

The point is I often feel forgotten, and while my pride probably needed the jolt of reality, this has more than once swung too far and too fast in the other direction. Depression, illness, and exhaustion are common in caregivers (check, check, check). So is early death (uh…).

My caregivee spent most of the last three years doing better than expected, but he is firmly in the middle stages of Alzheimer’s now. There are more appointments to keep, more decisions to make, more aberrations to track, but I still have time to twiddle my thumbs and ponder the perpetual now. Those moments have become rather empty.

I have the minimal support system I need to get things done. We have food, income, housing, stability, and back-up for when one of those things flounders. What I need are gentle reminders that I am still a human being and I am entitled to an at least occasional affirmation of my humanity.

So here’s an updated list of only five things YOU can do to support me (or another caregiver you know):

Say hi (preferably not on Facebook). I have a dozen apps, sites, or other interactions where we can chat, including text and meatspace. Most of them have become specialized for affirmation during my time as a caregiver, but Facebook is weighed down by the 500 friends and years of algorithms that predated my caregiving days (to say nothing of their admission that negative posts get more traffic, so it’s in their best interest to make our days worse).
Connect me to new friends. I don’t really get to meet new people. No coworkers, no classes, no dates or parties… If you think I should meet someone, just connect us. If you know any other caregivers (not necessarily Alzheimer’s, but especially them; not necessarily young, but especially them), connect me.
Stop telling me about Alzheimer’s breakthroughs. The next person who posts a link to an article about an Alzheimer’s breakthrough on my wall is going to get snail-mailed a copy of last week’s local Greensheet; that will do you just as much good as those articles are going to do me/us. Yes, there are exciting discoveries afoot, but they are already too late to do my caregivee any good and that makes them just one more distraction.
Face-time. Come see me! Invite me over! Does anyone just hang out any more? Special props to anyone who lives within a 20 minute drive, wants to drop by because they’re “in the neighborhood”, or is willing to accompany me on one of my numerous errands!
Share your joys with me. Little or big, I don’t care. I missed a half-dozen weddings last year, but the ones that hurt the worst were the ones I wasn’t even invited to. So send me a postcard, post a cute meme, tell me about your new favorite movie. Even if it’s something I wouldn’t appreciate in the way you do, I WOULD appreciate how much it means to you. Celebrating your humanity will help me hold onto mine.

Thank you, sincerely, just for reading this. Any small or large effort would be appreciated, especially in the weeks and months after this post has waned. Hopefully, other caregivers can use this, too, so share it with a caregiver you know and ask them to customize a list of ways you could support them, too. Remember: our society is aging fast. Some estimate that up to 1 in 3 of all Americans alive today will be a caregiver at some point in their lives. I’m just one of the first you know.

*posted without edits or links, because I’m trying to develop a stance of Imperfectionism*


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