Posts Tagged ‘social media’

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Caregiving and Social Media

2016.February.17
I overdid it as a caregiver. Burnout isn’t a line you cross, it’s a toxicity that builds slowly, poisoning you and eventually poisoning the unfortunate souls around you. I couldn’t even see the forest for the trees at the time, I just did what I thought I had to do and utilized the resources I found along the way.
 
But caregiving should not be a zombie apocalypse first-person-shooter. Some of the damage done may never be repaired. I can only hope to cultivate from the whole experience a deeper, eventually academic, understanding of what caregiving burnout does to people, to relationships, to families, than has heretofore been produced.
 
I’ve always had this inclination to document everything I did and broadcast my experiences; it’s a big part of why I embraced “Free” as an identity. I felt that people needed to know about the possibilities — those who have privilege and freedom should explore it and then use it to help others, and those who do not should fight for it. What is experienced should be shared, so that others can find their own path. It can come off as narcissistic, and there’s probably some validity to that, but in a weird way it’s seen as devotional from within.
I can acknowledge a path as misguided and still be grateful that it got me where I am. (I hope) I’m no longer the 15-year-old who saves every band banquet program because scholars will one day need a detailed record of my impactful life. But because I learned to self-articulate and self-archive in such a manner, I do have a digital trail of the last four years, times I can’t recall well now. It means I can go back and trace the early cracks in lost connections and perhaps even enumerate my most egregious misdeeds. It means I can correlate the ups and downs of my well-being with which apps I was using at the time (when I started to experience verbal saturation, Pinterest was a gift, yall) or the medical status of my caregivee. Every note I’ve forgotten, every boost from which I benefitted, every like on Facebook is a clue into how I got through my own little zombie apocalypse.
In other words, I have data.
And it’s not a lot of data, but maybe it will provide a framework against which I can eventually study the experiences of other caregivers (or, let’s be honest, maybe it will provide a useless contrast against the useful framework that comes from people who generally live their lives very differently from me). It’s a start.
I still have trouble articulating what I want to do. I want to conduct a census of caregivers. I want to document and map out their experiences. I want to talk about our relationships, before/during/after. I want to develop resources to help caregivers feel less isolated, support one another, and accept the ways in which we will (for a time) simply be unrelatable to most people. I want to identify the resources that exist to support us and ensure they are getting rigorous oversight and improvement. I want to map out transitions, from part-time to full-, full- to part-, family cycles of responsibility, sudden endings and not-so-sudden… I want to create some sort of timeline for our emotional states relative to something other than the health of our loved ones.
Ancillary to this work, I want to study the Internet as an exercise in community/ies, identifying and articulating in ethnographic and anthropological ways those fleeting moments when one online space can define a life before it fades into sporadic notifications to an email address where you’ve forgotten the password… I want to continue to learn how to grow intersectional awareness and especially to get more white people to stop listening to me and go listen to a person of color. I’d even like to apply a philosophical examination of voting-as-harm-reduction and whether it necessitates voting pragmatically over idealistically every time (but that’s more of a hobby).
As always, I want to learn to communicate, to educate, and to learn better.
At this point, all I bring to the table is a rusty resumé, some stress-induced acute cognitive decline (hopefully acute), a 14-year-old degree in English, financial security for one year (maybe two), the braggadocio to attempt grad school full-time without really knowing how I’m going to pay for it, and a whole lot of curiosity.
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What I Need to Tell…

2015.December.14

I’ve had a bit of writer’s block the past month or so, not because there’s nothing to tell but because it’s all just a big jumble of rubber-bands — not one of those slick rubber-band balls that you pick up and strip away one swatch at a time, but a crumpled cluster of enthatched rubber of indiscriminant qualities and age.

I told myself it would be easier if I just started posting the topics; whether I followed through was kind of unimportant. I just need a reference point for future conversations, future reflections…

So here are some of the topics that deserve full posts and rigorous conversations (but probably won’t receive them):

Why did I have to go to Washington, DC, for the funeral, and why did I only stay for one impossible night?
Why did I hide myself with the former colleagues I saw there, making no mention of my successful plural relationships, my workshops supporting the same, and my interest in the same sexual and reproductive topics that we struggled to include in our work a decade ago? It’s no different from my crippling identity crisis when I lived and worked there, is it?
Why didn’t I ask them to talk about themselves more when all I wanted was to NOT spend the whole afternoon talking about myself (and doing exactly that)?
How do I feel about the fact that our deceased mentor was the only one of them to stay in regular contact over these past four years of caregiving?

Healing is incredibly hard, and it’s impossible to know how much there will be until things are stable. My self-care and relationships are probably in critical-but-stable condition.
I am exercising restraint and caution when thinking past the holidays. I need openness and flexibility then and rest and low pressure now.
I have got to find a way to break myself of the old habits that became dormant during caregiving.
I really want to get back into reading.
My brain still doesn’t feel like my own. My mood and endurance know great heights, but I still mix up words and drop things as much as I ever have.

I was the first caregiver I knew of my generation, but I am far from last. Already, friends and peers are approaching me to share their accounts of dementia in the family and identify a path forward.
If I expand my umbrella of “caregiving” beyond just dementia/memory care, I realized I know quite a few part-time and full-time caregivers under the age of 30, 40, 50. We are not as alone as we think.
The first piece of advice I’d give any new caregiver might just be “Caregiving is not a spectator sport.”

Also under the category of “not as alone as we think”, I’ve discovered a lot of people were following along my adventures online these recent years who never once spoke up in support or comfort. My loved ones had already helped me understand before my peers themselves did that said peers simply didn’t know what to make of me and my circumstance, but I’m almost as resentful of their reemergence en masse now that I’m “normal” again as I am that they were ever absent. I just don’t think they realize how much of myself I forgot existed, and how many voids little notes and acknowledgments would have filled. I wish any one of them had said, “Hey, you’re going through a rough time, but I can’t hang while you’re going through this; drop me a line when your life isn’t consumed with old man smells and navel-gazing.” But this is literally all I want to ever say on the matter, because I love them all for being there now.

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

2015.July.12

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.

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PSA: It’s Okay to Laugh

2015.May.20

[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).

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

2015.March.31

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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