“Super perfundo on the early eve of your day.”

The first newsletter from my Substack newsletter, Halcyon Tidings — subcribers welcome!

* See end for source of subject/title quote! 🎬🍿 * 

Hey there,

Welcome to Halcyon Tidings, a bi-weekly dose of real but uplifting takes on life, getting through it, and trying to be the best humans we can be. (Also much randomness.)

Right now I’m thinking a lot about security in life, on a personal level, but also wondering how many of us actually feel secure in our lives. I had a delightfully quirky therapist who once responded to similar wonderings of mine by sharing, “I feel completely and totally secure,” with the most contented and safe vibe I’ve ever felt. It was the first time I’d ever heard anyone say something like that, and I believed her. She’d also shared enough for me to guess she wasn’t well-off—perhaps irrelevant as wealthy people often seem to be the most anxious in that regard—and she must’ve been in her mid-70’s, still working. But she radiated security from her core, and glowed for it.

That glow, and our personable visits, got me through a very scary, painfully insecure (and lonely) time. It helped me believe that I could cultivate that feeling of safety within myself as well, rather than relying on the mad rollercoaster of life to find such stillness. 

I honestly haven’t been able to do it yet, not really. For short periods I have, even during scary times (I’m disabled and have been going through the SSDI process for close to a decade); but the “what if’s?!” and fearful tears still occupy far, far, too much of my emotional space. I’m 40 now (heyyy middle age 💃), so I suppose she had 30+ years on me. Hopefully I’ll grow into someone with such authentic peace in the face of life’s infinite challenges and unknowns. 

For now I’m just trying to focus on active surrender—doing all I can do, then trying my best to let go and actually recharge in my downtime, finding a feeling of security by soaking up appreciation for whatever the moment is offering instead of letting my mind spin out in exhausting futility. (Appreciation Ex., As I draft this, the blanket by my face is so so soft, and same for the warm doggo curled up at my knees, gotta love the coze.)

I hope this month has treated you well, and all of 2023 for that matter. (Collectively, I feel like we’re very very due for a good year!) And thanks for reading.

See ya (-ish) in a couple weeks,

Meg 
HeyMegHartley.com

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More Words:
The ProgressiveThe Long Road to #StopTheShock
Medium, Artfully AutisticHow an Emotional Support Dog Helps This AuDHD’r
The Bookbaby – Underneath It All: Peeling Back Societal Bullsh*t to Reveal a More Whole You

* SUBJECT/TITLE QUOTE: “Super perfundo on the early eve of your day” is from 2001’s Waking Life, a film about consciousness, life, philosophy, everything (and nothing) all at once. *

The Long Road to #StoptheShock

For two decades, a Massachusetts school has been under fire for torturing disabled students with shock devices. Now, activist efforts to end the practice may soon pay off.

Originally published by The Progressive
BY MEG HARTLEY
FEBRUARY 1, 2023, 6:00 AM

In the mid-90s, around the age of eleven, I saw a television show on PBS about old asylums that would do horrifying things to people society deemed insane. It scared me, especially since it didn’t clarify what happened to those same people in modern times.

I asked my mother, who took some time before she answered. While waiting for her response, my mind raced with early memories I tried to suppress: frequent teasing, adults concerned about how I didn’t “act normal” and had atypicality in developmental milestones.

“Well, there’s definitely still improvements to make,” my mom finally said, “but those awful torture-like treatments don’t happen to people with mental health issues anymore.”

While she was right about most things, she was sadly wrong about this.

To this day, there are Americans being subjected to a treatment that the United Nations Special Rapporteur on Torture has officially condemned as torture at the Judge Rotenberg Center (JRC), a residential school for students with disabilities in Canton, Massachusetts.

Patients at the facility with “developmental disabilities, emotional disorders, and autistic-like behaviors” are being shocked using an extreme form of aversive therapy. This procedure sends strong electric shocks throughout an individual’s body with a device called a graduated electronic decelerator (GED). It is often used when patients exhibit unwanted behavior — which, according to those who have undergone the treatment — pretty much means not acting “normal,” a standard that the center defines loosely.

In fact, the movement against JRC, known online as #StopTheShock, gained traction in 2012, when partial footage of a Black autistic teenager named Andre McCollins being shocked thirty-one times in seven hours was made public. McCollins was allegedly forced to undergo the treatment for refusing to take off his jacket, while all but two of the shocks were for “tensing up” or “screaming.” JRC claims to only use GEDs in extreme cases, but, again, that deeply conflicts with the experiences reported by many people who have had to stay there.

Additionally, the only defense that JRC offers is claiming the GED is necessary to prevent self-injurious behavior (SIB) as well as aggression (AG) and saying that they have the most difficult cases in that regard. But the FDA strongly disagrees. The FDA’s 2020 inspection reported, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs [electric stimulation devices] are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.” JRC doesn’t need to be shocking these already-struggling people, it’s just not necessary.

You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”

To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4 — a type of electric stimulation device that is not approved by the Food and Drug Administration — shocks patients at 90 mA, which is nine times higher than a cattle prod and around twenty-two times stronger than an electric fence.

The fight to end the torture happening at Judge Rotenberg has been going on for nearly two decades, but JRC’s influence and funding has been an obstacle. In 2020, they received $84,108,326 in grants and other government funding. That same year, the FDA attempted to ban ESDs at large, stating the agency “has determined that these devices present an unreasonable and substantial risk of illness or injury,” which could include “depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness.”

But JRC reacted by suing the FDA, and in July of 2021 the ban was overturned by the U.S. Court of Appeals for the D.C. Circuit, stating, “a use-specific” ban “interferes with a practitioner’s authority by restricting the available range of devices through regulatory action.”

But, due to the efforts of community activists, most vocally the Autistic Self Advocacy Network (ASAN), that may soon change — the recently passed omnibus bill includes a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification. Now the agency just needs to know that the public is against this torture and in support of the #StopTheShock movement.

We’d like to think that we’ve moved on from the days of treating people who can’t squeeze into a homogenized idea of “normal” as less than human, but in far too many cases, we really haven’t. As a neurodivergent person who’s had public autistic meltdowns — something that can get you put in places like JRC — this is a terrifying example. So, please, for the sake of the millions of neurodivergent people in this country, and especially those at JRC right now, please bust out that phone and start putting pressure on the FDA.

You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”

Again, big thanks to The Progressive for funding and originally publishing!

Jennifer Msumba/Wikimedia — A drawing by a former resident of the Judge Rotenberg Educational Center depicting the punishment of GED shocks while restrained to a four-point board. According to the artist, residents sometimes received multiple GED shocks while restrained to a four-point board as punishments for standard infractions.

Underneath It All: Peeling Back Societal Bullsh*t to Reveal a More Whole You

A month to shake off the societal madness, find the mental peace beneath it, and try on new ways of living. 

My bookbaby, Underneath It All: Peeling Back Societal Bullsh*t to Reveal a More Whole You, is a 3-part book dedicated to helping people in modern society shake off harmful conditioning that narrows the way we see one another, ourselves, and the point of this whole living thing. It aims to open up potentiality for authentic expression, living more consciously, and having more fun whilst doing so.

  • Part I defines and details Societal Bullshit, also helping you to identify what it means to you personally and how you’re affected by it, using tales from my very-lived life to illustrate examples of the negative effects it can have on people, as well as plentiful research to expand and back up my points.
  • Part II will teach you to calm your mind so you can watch it for thoughts of toxic society ick—I promise it’s in there, we’re literally trained for it—by challenging you to a 30-day meditation challenge, slowly increasing your time as you go, and offering various styles so you can find something that works for your needs and preferences.
  • Part III will help expand your boundaries by challenging you to complete 20 out of 30 (quick) Adventures: you’ll be doing random acts of kindness, fessing up your truth, making stuff, and generally connecting to life in real and refreshing ways; accompanied by four inspiring stories of lives lived with bold authenticity. Parts II and III include space to write thoughts, draw impressions, or paste pics/mementos.

Together, it’s an average of 20 minutes a day or so, longer if you get creative with it. The world is a strange and disorienting place, but the one-month growth project that is Underneath It All will help you to better orient yourself within it by teaching you to examine how societal bullshit’s crept into your mind and providing guidance and (often fun) strategies to get centered in your actual you, your whole you.

By the end of the month, you’ll feel like your perspective on life has gone through a refreshing cleanse, and so has your mind—which is really your home, if you think about it. (And the lease is for the rest of your life…)

I just got started seeking representation, so stay tuned, friends. ❤

Brené Brown’s 6 ‘Empathy Misses’ + Why They’re Important

Disability has taught me a whole lot about these not-comforting-yet-still-ubiquitous moves.

Aug 9, 2021

Photo by Sarah Kilian on Unsplash

Ahhh, the empathy miss — that crucial moment when someone’s having a hard time and you really want to say the right thing, but after you speak there’s just a painfully awkward pause…you’ve stepped in it, and made things worse.

Or the reverse, you’re having a hell of a time and express that fact, and someone says something with the best of intentions — but rather than comfort their words leave you feeling invalidated, misunderstood, and worse than before you reached out.

As a society, we really aren’t great at holding emotional space for one another.

Luckily, a sociology researcher and famed storyteller named Brené Brown has been researching topics in this arena for well over a decade.

She’s covered many relevant ideas in this area, but one of the most helpful is probably her list of empathy misses from the book Dare to Lead.

Brené Brown and Empathy

These are common well-intentioned behaviors displayed in emotional times of need that completely miss the mark, leaving the already upset person feeling more so.

While I’ve certainly been on the side of empathy miss, as everyone has, I’ve also dealt with being on the diminished end recurrently since invisible illness and problematic Autism traits have taken over my life.

People genuinely seem to want to say things to make me feel better, but they’ll wind up invalidating my experience or changing the topic altogether; leaving me feeling not only still alone with the issue, but also feeling like I’ve erred by even bringing it up.

And these are mostly kind, truly well-intentioned, people; and this happens to all kinds of Neurodiverse and/or disabled people.

They are trying — we all are trying — but we lack tools. This stuff just wasn’t included in our social conditioning. (And in some cases, there were toxins in its place.)Brené Brown’s 6 Empathy Misses

Photo by Marc Kleen on Unsplash

The concept of empathy is often described as a quality that people simply possess, or not, but while some folks do seem to have a particular knack for effectively understanding others’ feelings — Brown says empathy is also something we can work to become more effective at.

When dealing with nebulous and subjective issues, it’s often best to look at the failed attempts — or, what not to do. In this spirit, I’d like to present the 6 Empathy Misses identified by this sociologist who’s dedicated her life to helping us live with more heart.

This work branched out from her interest in human shame, with these being common unhelpful reactions after someone’s divulged an err. The list is from Dare to Lead, with explanation text from the book’s study guide, followed by my brief take:

Empathy Miss #1: Sympathy vs. Empathy

The friend who responds with sympathy (“I feel so sorry for you”) rather than empathy (“I get it, I feel with you”)

When faced with an immediate internal reaction of “sucks to be you,” the most caring words are often something like, “That sounds really hard, need to vent?”

Empathy Miss #2: The Gasp and Awe

The friend who hears your story and feels shame on your behalf.

Have you ever confided in someone, sharing a mistake you’re processing — and instead of empathizing, as you might expect a friend to do, they act horrified and judgy?

Yeah, everyone else too. Let’s start trying to remember our own f*ck-ups before condemning those who trust us with their struggles.

Empathy Miss #3: The Mighty Fall

The friend who sees you as perfect. They are so let down by your imperfections and disappointed in you (“I just never expected that from you. I didn’t think you would ever be someone who didn’t do well. What happened?”)

The thing about pedestals is that they’re really easy to fall off of — plus, you know, they’re complete and utter bullshit. No one is perfect. That’s not even a thing. When we expect people to be better than human, we lose our humanity.

Empathy Miss #4The Block and Tackle

The friend who is so uncomfortable with vulnerability that they criticize you (“What happened?! What were you thinking?”)

Otherwise known as, “How to get people to never trust you again,” this deflective move helps those scared of feels to avoid their own self-reflection — and it’s really freakin’ common. We live in a really judgy society and that kind of persistent energy can lead to folks becoming really defensive, which often turns into lashing out with condemnation.

I’ve (slowly) learned that compassion is the way out of judgment. When I’m hurt and my mind gets hardened over the WTF-ness of someone’s behavior, I do my best to imagine there’s a reason I’m not aware of before doing anything about it. It’s hard, but it’s important to remember that perspective really is everything.

Empathy Miss #5: The Boots and Shovel

The friend who is all about making it better and, out of their own discomfort, refuses to acknowledge that you can actually make terrible choices (“You’re exaggerating. It wasn’t that bad. You rock. You’re perfect. Everyone loves you”). They are trying so hard to make you feel better that they’re unable to connect with your emotions.

This is another popular one. When feeling shame, and wanting to talk about the mistake — something that can lead to not making the err again, as the mind’s verbally articulated why it’s a nope — but someone just won’t believe you, it’s invalidating at best; and, at worse, it enables problematic behaviors.

Empathy Miss #6: If You Think That’s Bad…

The friend who confuses “connection” with the opportunity to one-up you. (“That’s nothing. Listen to what happened to me one time!”)

This one’s another one that often happens with truly good intentions, wanting to help the other person see that things could be worse; but it’s actually invalidating, and leaves the hurting person still alone in the issue they were hoping to talk to someone about.

Empathy Miss #7I Can Fix That!

The friend who immediately jumps to problem-solving rather than just being with you in your experience.

Most of us struggle with this one, especially if friends often come to us for help solving problems. One helpful empathic reply is to acknowledge the feelings and ask, “What does support look like?” This gives the person in struggle the opportunity to say, “Just listening helps” or “Can you help me figure this out?”

I’ve got nothing to add here, such wise words.

And a recap from the Daring Greatly study guide:
  • Be kind.
  • Be curious.
  • You don’t need to fix it or make people feel better. Connecting and listening is powerful.
  • Try to understand how the person is feeling (not how you might feel in the same situation).
  • Help people know that they are not alone in their feelings. Even if you’ve never had that experience, you might know the feeling.
  • Let people know that you are grateful they shared with you.
  • Allowing opportunities for second chances. When we miss the opportunity to show empathy or when we would like the opportunity to do it better, we can say, “I’d like to circle back.” In this context, circling back means practicing empathy by trying again.
Photo by Andrew Thornebrooke on Unsplash

It’s Been Two Years Since My Autism Revelations

I’VE YET TO REACH THRIVING, BUT I’M SURE WORKING ON IT.

July 24,2022

Photo by Randy Jacob on Unsplash

Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:

They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.

Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.

It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.

But the thing is, I don’t live in a society that’s allowed me to do so.

The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.

There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.

And don’t even think of wearing headphones. Those are anti-social.

But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.*
* These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.

Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.

The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.

Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.

But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.

The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.

I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.

I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.

In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.

But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.

I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.

Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.

I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.

It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.

In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.

Since then, not so much.

I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?

And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.

The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”

Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.

Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.

Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.

I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.

And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.

I’m broken, really broken. But I don’t wish to shatter.

Photo by Faris Mohammed on Unsplash

Societal Conditioning is Losing Its Grip, Let’s Help

Advocacy movements are changing harmful norms, but they can’t do it alone.

Still from ‘They Live,’ a 1988 cult-classic, very clever take on societal conditioning, and great follow-up to reading about this topic. (Image via letterboxd)

Social conditioning is a lot like air, we hardly notice it, and yet it affects every aspect of our lives.

It’s defined as ‘the sociological process of training individuals in a society to respond in a manner generally approved by the society in general and peer groups within society,’ and it looks like going to school, interacting with peers (especially “fitting in”), engaging with pop culture, adapting to work environments, etc.

These things shape the way we view the world and interact with others.

And right now, Americans are learning that our “air” has some fiercely toxic issues.

Though there have always been Black advocates speaking up, nearly a decade ago The Black Lives Matter movement finally brought national attention to the fact that we most definitely do not live in a post-racial society (which has been clearly reflected in demographic statistics for decades) — and yet our public schools essentially teach that the ’60s brought equality to our country.

Generations were taught that we’re “a nation that doesn’t see race,” learning that ignoring our racial differences was helpful; and this conditioning has led to continued societal disbelief and inaction in regard to the very real racial disparities in the US. It’s horrifying.

Then the #MeToo movement busted onto the scene in 2017, exposing the harmful misogynistic norms that women have been dealing with in America all along — and making a lot of us pretty furious about all the “sugar + spice” conditioning that basically trained us to put up with harassment and abuse, all in the subconscious pursuit of trying to be the “good girls” society told us to be.

Photo by Edrece Stansberry on Unsplash

And though disability advocacy movements haven’t yet caught the nation’s attention, we’ve been yelling for a very long time. From extensive issues with accessibility (for wheelchair users and beyond), massively-funded nonprofits that actually work against us (*ahem, Autism Speaks*), to a society rampant with inspiration porn in place of actually informing people about how to work with our different needs; to excessive government focus on “preventable illness” and little-to-none on the myriad of conditions that can’t be, resulting in a blame-the-patient culture that’s really hard to survive —we’ve got a lot to be upset about.

All-in-all, America has a white-supremacist, sexist, ableist (+!) set of social norms; and they need to change, fast.

While developments like oodles of (brilliant) intersectional entertainment, advocacy movements regularly trending on Twitter, and increased diversity in politics are helpful and encouraging; we also need our societal conditioning to change in a structural way, in our government and healthcare systems, schools, workplaces, and how media is sourced and distributed.

Luckily, the evolution of societal norms is often a direct result of individuals speaking up. A paradigm shift is not only possible, it’s already happening.

For example, those same public schools teach young minds that Thanksgiving commemorates a peaceful celebration of unity between settlers and Native Americans when history shows that the opposite was true. And this propaganda is taught by teachers who are overwhelmingly white, with a lived racial experience that 4 in 10 Americans cannot relate to.

Photo by Mwesigwa Joel on Unsplash

We need schools that teach actual, factual, history, and it needs to be taught by teachers who represent the demographics of the students in this country.

Now let’s pick on the media. Television and magazines propagate impossible ideals, corporate support/dependence, and harmful norms that serve to protect the status quo — which isn’t surprising since six white-male-led companies control the vast majority of the media, often resulting in news coverage and bias that benefits those already on top.

The “normal” office space is also rife with room for improvement. The constraints of “acting professional” usually have more to do with not causing waves than treating colleagues with respect — and this conditioning serves us in the exact same way as the “sugar + spice” bullshite, helping to maintain the toxic status quo through unspoken demands like code-switching.

The effect of our present societal conditioning is that people are expected to “fit in” in order to move up in life, which is functionally racistsexist, and ableist in application — ensuring that the people on top, stay on top.

(And we’ve only talked about 3 offensive ists harming our society! There’s plenty more.)

It might “make waves“… 😮 (‘They Live’ film still provided by Universal Pictures, via Fonts in Use.)

How to Help

Norms are changing on our screens, now it’s time to securely bring inclusive changes into the schools, offices, and community spaces of the United States.

It’s time to check ourselves. And it’s time to speak up against harmful norms.

Everyday. Everywhere.

Luckily, the evolution of societal norms is often a direct result of individuals speaking up. A paradigm shift is not only possible, it’s already happening.

But it needs all of us.

Here are 6 ways we can help detoxify the effects of societal conditioning:

  1. Learn, learn, learn. We need to educate ourselves in areas where we have societally-suggested knowledge gaps (or even misinformation), carefully ensuring that what we’re reading was written by a member of the affected group. This can take some effort, but it’s worth it to ensure that what we’re reading is truly the perspective of the community affected. (There are lots of advocacy personal essays on Medium, so you’re at a great place to start.)
  2. Inspect our language. Our culture is rife with popular terms that are actually offensive to our many vulnerable demographics, and even well-meaning can people offend. (We’re practically trained to, via societal osmosis.) And it’s important to pay attention to aspects that aren’t usually considered; such as more subtle aspects of discrimination (ex. for ableism, hurtful usage of words like ‘crazy’ and ‘stupid’), phrases like “that’s just the system” that subtly stand up for the status quo. And it should go without saying, but this applies to every space — not just those where minority groups are present.
  3. Request change from the leaders of our society, especially politicians and corporations. Be it an email to your local political representatives about the harm of letting misinformation masquerade as news, no longer supporting an offending corporation due to sexist advertising, or calling out a celebrity for the societal ramifications of an ableist action; individual complaints add up and are often (eventually) appeased.
  4. Request change in your environments. Again, individual input matters! When enough of us ask for changes in respect to well, respect, leaders have to respond. And there are now training programs to help educate employees, students, and communities on how to better accommodate one another, so why not encourage one?
  5. Speak up when you’re affected. We need to speak up when we’re hit by the negative outcomes created by societal conditioning, or it will seem like “we’re fine with it.” If a teacher only calls on the white kids, if women in your office are paid less than men, if you’re being treated as if your disabled needs are irrelevant, or anything else of that nature — now’s the time to speak up.
  6. Learn to welcome the different. Even when we try not to let it, subtle-yet-constant conditioning affects how all of us see the world, often creating anxiety around allowing new experiences and people in. But in addition to being the inherently more kind thing to do, diversity has proven benefits; the more perspectives, the more coherent the collective understanding will be.

Inclusivity, attentiveness, and compassion in regards to our differences need to replace the societally-pervasive dinosaur mentality of “that’s just how things are done.”

And it starts with us.

12 Tips from a Gorilla, Re: Global Calamity

He’s got some changes in mind.

If you visited a zoo, and a gorilla started talking to you, what do you think they’d say about humanity? Think they’d be cool with the modern state of affairs?

According to Daniel Quinn, author of 1992’s award-winning Ishmael: An Adventure of the Mind and Spirit — the answers are a whole lot, and hell no.

Image for post
Courtesy of Giphy

Ishmael features a man being taught about the world by a gorilla, one who divides humanity into two types: the Leavers and the Takers.

The first philosophy puts humans within the web of nature, working consciously to only take what they need; and the other puts humans as the world’s ruler, free to take whatever we can.

If the events of 2020 have left you questioning the way our society does things, or are interested in living a more conscious life — this should be your next read.

Here are a dozen (very hard-to-narrow-down) quotes from the book:
  1. “The premise of the Taker story is ‘the world belongs to man’. … The premise of the Leaver story is ‘man belongs to the world’.”
  2. “And every time the Takers stamp out a Leaver culture, a wisdom ultimately tested since the birth of mankind disappears from the world beyond recall.”
  3. “I have amazing news for you. Man is not alone on this planet. He is part of a community, upon which he depends absolutely.”
  4. “The obvious can sometimes be illuminating when perceived in an unhabitual way.”
  5. “You’re captives of a civilizational system that more or less compels you to go on destroying the world in order to live… I think there are many among you who would be glad to release the world from captivity… This is what prevents them: They’re unable to find the bars of the cage.”
  6. “The world of the Takers is one vast prison, and except for a handful of Leavers scattered across the world, the entire human race is now inside that prison.”
  7. “Donald Trump can do a lot of things I can’t, but he can no more get out of the prison than I can.”
  8. “They put their shoulders to the wheel during the day, stupefy themselves with drugs or television at night, and try not to think too searchingly about the world they’re leaving their children to cope with.”
  9. “Diversity is a survival factor for the community itself. A community of a hundred million species can survive almost anything short of a global catastrophe.”
  10. “We’re not destroying the world because we’re clumsy. We’re destroying the world because we are, in a very literal and deliberate way, at war with it.”
  11. “The mythology of your culture hums in your ears so constantly that no one pays the slightest bit of attention to it.”
  12. “I think what you’re groping for is that people need more than to feel scolded, more than to be made to feel stupid and guilty. They need more than a vision of doom. They need a vision of the world and of themselves that inspires them.”

Can you envision a version of yourself you find inspiring?

What about the world?

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Why I Stopped Trying to Be “Normal”

Normal is inherently othering, divisive, and reductive.

Photo by Dan Parlante on Unsplash

Originally published in the Medium publication, The Ascent. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)

The word “normal” comes up a lot in our society.

We use it as an aspiration, “I just want to be normal,” or as a judgment, “that’s…not normal,” it’s even used like it’s a synonym for healthy, “that’s perfectly normal.”

I believe that all three uses are problematic for many reasons; but primarily because these homogeneous expectations have a very toxic effect on our mental health.

I feel that this is true even for those who feel they’ve achieved this mysteriously lauded act of mediocrity, but it’s especially toxic if you’re born in a body that excludes you from this supposed normality.

During my school years, the adult world told me that I was one of those lucky people, that I was normal, and that this was definitely a good thing — that I’d do just fine in life because of it.

I always knew it wasn’t quite true, and certainly faced much teasing despite this supposed normality, especially early on, and I certainly struggled to adjust to adult life more than my peers — but at 37 years old, I learned that I’m even less normal than I realized.

Last summer, I was officially diagnosed with Level Two Autism.

Society convinces us that we need to be less of ourselves in order to make more of ourselves. This is just bonkers.

This curveball brought many feelings, many of which were good, especially through the initial process of self-diagnosis; learning all about how my particular neurotype works while finally connecting to a community of people who quite literally think like me. There’s been much self-acceptance and empowerment since the diagnosis, it’s hard to explain the lightness that has come from knowing the physiological reasons as to why I am the way I am.

But, unfortunately, those weren’t all of the emotions. It was also really hard to learn that I was not only not normal, but that having tried so hard to pretend like I was had helped send my body and mind into malfunction.

After my diagnosis, I was tormented with endless painful memories slicing through my consciousness, each even sharper through this new lens; often making the other people involved seem cruel. Sometimes it even made me give up on humanity at large because most of them weren’t even “bad people” they were f**king normal peopleIt was horrifying, especially once I learned how high Autistic suicide rates are.

Belonging is being somewhere where you want to be, and they want you. Fitting in is being somewhere you really want to be, but they don’t care one way or the other.” ― Brené Brown

The combination of that emotional maelstrom plus not having anyone to talk to about it brought continuous Autistic meltdowns, which led to dangerous public scenes, seizures, a terrifying mental break, and neurologically-disabling Autistic burnout that I’m still fighting nearly a year later.

The most overwhelming upset was, and is, because Neurodivergent people are made to believe we need to spend our precious mental energy on acting “normal” to be accepted and survive. (FYI: Faking your neurotype doesn’t leave much energy for the important stuff.)

And we aren’t the only ones — in addition to systemic issues and individual biases, BIPOC communities are given the burden of code-switching, which has toxic effects on mental health. As a fellow Medium writer puts it, “Code-switching causes more harm than good because it creates tension between self-expression and social acceptance.”

Photo by Samuel Regan-Asante on Unsplash

There are many more examples of how already-disenfranchised communities have to bend and twist to squeeze into “normal,” and it’s not at all limited to those who’re in bodies perceived as different in some way — there are all kinds of ways we can be “too different,” “too much,” or “not enough,” and they rarely have anything to do with lacking integrity or kindness.

Additionally, when crises happen in people’s lives, they often feel as if they’ve been thrust from the safety of being perceived as normal.

Whether it’s with issues regarding abuse, finances, rape, or the many other ways life can unexpectedly go pear-shaped — people who’re already going through a lot often then also have to deal with shaming from the people in their lives, as well as fearing they’re perceived as “having baggage,” or being “too broken.”

We wind up feeling like we have to hide in some way to be safe, which often leads to going through difficult times alone.

In my case, others continually encouraged me to hide the (many) ways of being I know now are Autistic, and it took me over 25 years to see that the opposite is true — we must show up authentically to have any shot at finding true acceptance and belonging.

If you are always trying to be normal, you will never know how amazing you can be.” ― Maya Angelou

We’re all being taught the wrong message.

In effect, society communicates that our whole selves aren’t enough; it actually manages to convince us that we need to show up as less of ourselves to make more of ourselves. This is just bonkers.

Plus, it’s just a scam! The idea that being seen as “normal” keeps us safe is just an illusion, a test to see how far we can bend before we break. And if you look at the headlines in recent years, it’s easy to get the impression that the time to snap is upon us…

If you ask me, we’re collectively losing our shit because we’ve been convinced that we must be something we aren’t to survive, that we must be “normal,” because everyone else is and that’s just the way we like it.

But normal isn’t a freakin’ thing. (And it never was.)

Screw Normal, Go Be Your Best You

Photo by davisuko on Unsplash

Comparison is about conformity and its paradoxical message is to “be just like everyone else, but better.” — Brené Brown

While some folks might truly feel they are whatever is presently considered “normal,” it’s safe to say most of us find the expectations dictated by the concept to be FAR too tight (to say the least ) — so we have to squeeze ourselves into an uncomfortable mold, conforming to unwritten expectations that don’t suit, and, mental health-wise, there’s a heavy price to pay for this self-erasure.

To prioritize being normal is to decide that *who we are* isn’t safe. This is not an okay expectation! And it does not improve the lives of those working to oblige, it very often does just the opposite.

When we squeeze ourselves into whatever’s currently typical, when we spend our days trying to “be normal” — we wind up wasting our energy and focus on losing ourselves, rather than on becoming our best selves.

I love the way another Ascent writer describes the empowerment of tossing conformity aside, saying her whole self is “far more powerful than the Swiss cheese cutout I used to be.”

And of course it is!! We need our whole selves to thrive.

7 Reasons to Stop Trying to Be “Normal”

Photo by Bart LaRue on Unsplash

Let’s break it down, here’s 7 reasons to stop trying to be normal:

  1. Normal” is not a thing. I moved from city to city, hoping to find a place where the whole me was considered “normal,” and while I never found it, I did discover that there’s actually no such thing. While it’s most definitely possible to feel not normal, and some people do feel it more often than others, normal is just an illusion. Life isn’t that simple.
  2. It upholds toxic norms and power structures. The concept of normal is a moving target that’s defined a million ways, but most influentially by — and for — the people in power; the people in charge of media, the people at the top of the ladder, the influencers of our world. It’s an ephemeral nonsense concept that serves to uphold the status quo through shame. It’s bullshite, we don’t need it, and we certainly don’t need to waste our energy pretending to be it.
  3. The concept is inherently othering. As discussed above, “normal” leaves a lot of people out. There’s just far, far, faaaar, too many ways to be not-normal, and humans are a beautifully diverse species — and we’re stronger for it! Diversity is an evolutionary advantage, it’s a good thing that we’re all different. We need to start letting people share their full stories, and we need to start fully listening to perspectives and experiences different from ours. Working to understand each other better is the only way to improve things.
  4. Fitting in is very different from belonging. My life changed when I started reading the work of sociological researcher, Brené Brown. I’ve already shared a couple of quotes of hers, but here’s one more: True belonging only happens when we present our authentic, imperfect selves to the world — our sense of belonging can never be greater than our level of self-acceptance. In other words, when we squeeze ourselves into normal-shaped molds, we give up our ability to know real belonging due to denying our authentic selves a voice.
  5. Save yourself mid-life crises (or end ‘em). Trying to be normal is basically committing to the role of who we think we’re “supposed to be.” And if we look around, it’s easy to see that this often creates long-term commitments we can’t keep. How many of us wind up totally rearranging our lives halfway through because our original choices don’t really suit who we are as we start to really know ourselves? What if we could save all the fuss by simply living true in the first place?
  6. John F. Kennedy said it sucks. In his more dignified words: Conformity is the jailer of freedom and the enemy of growth.
  7. It’s not important, kindness is. Normal is often used in a way that suggests some associate the concept with integrity, with being good, “someone nice and normal,” but they are completely different things. They have nothing to do with one another at large, but especially in societies where marginalized societies report systemic ill-treatment. It’s easy to see that normal is very often a big jerk. Acts of compassion and understanding are demonstrations of integrity, not looking or acting a certain way.

When we simplify the human experience to one word, it reduces people to stereotypes and pits us against each other.

As a species, I think we’re ready to graduate from this Us vs. Them paradigm that leaves nearly everyone scared to be seen as “them,” and all of us competing against each other instead of working together. (And we’ve got some very real problems to solve.)

We have to stop trying to put each other in boxes, we’re all wildly unique people — that’s the beauty of humanity! It is not something to hide.

Screw “normal.” We don’t need no stinkin’ boxes.

Photo by Kristina V on Unsplash

Why Many Autistics are Offended by Elon Musk’s Use of “Aspergers”

The term is no longer in the US’s diagnostic manual for very good reasons…which include Nazis.

(Image via People.)

Originally published in the Medium publication, An Injustice!. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)

In early May, Elon Musk made a personal announcement while hosting the NYC-based show Saturday Night Live, one that’s upset many autistic people: “I’m the first person with Asperger’s to host SNL, or at least the first to admit it.”

It’s okay if you’re not seeing the harm in that.

US society (and global perception at large) is becoming more conscious and undergoing many simultaneous changes in perception, like a massive detox — people at large are still ill-informed of impactful issues concerning disadvantaged communities, and the autistic population is no exception.

All we can do is listen to a variety of people from the affected communities, and learn.

In this case, community objections include the smaller issues that Dan Aykroyd was actually the first autistic person to host (which was uncool to gloss over), and the word ‘admit’ could reflect internalized ableism — but the main issue is around the term ‘Aspergers,’ which has become controversial, especially here in the US.

It was removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013, when Asperger’s Syndrome was absorbed by Autism Spectrum Disorder (many in the community prefer the more-descriptive Autism Spectrum Neurotype).

(Photo by Jon Tyson on Unsplash)

The associated functioning labels were also dropped due to harmful outcomes: those labeled “low-functioning” experienced opportunities being withheld despite ability and many in the “high-functioning” category were conversely presumed able to do things that they could not, therefore denied support and accommodations, leading to meltdowns and reduced functionality (and worse).

Basically, the functioning labels were a hot mess that left a lot of autistic people traumatized.

The new way has many flaws as well, mostly for also having a vague approach that leads to similar experiences of ableism — but at least it’s a little more specific and refers to support needs rather than pretty directly implying ability in the verbiage. Now, formally diagnosed autistics are assigned a Support Level at diagnosis. (Self-diagnosis is also widely accepted in the community due to excessive bias and barriers in the diagnosis process.)

I have a diagnosis of Level 2: Requiring substantial support. I was just diagnosed last year, but suspect I’d have been a Level 1 around 6–7+ years ago, as the problematic areas have greatly increased; something that’s common among autistics who mask their traits.

It’s presently a helpful distinction for me, as being without support has resulted in extended burnout and frequent meltdowns — however, it’s easy to see how it could backfire in very similar ways, especially as troubling traits fluctuate.

To provide an example of how problematic autistic traits can be fluid,
at this time I’m capable of doing things like writing essays about my current special interest (ta-da); but if I were to try to do this in an office, early morning hours, or even attempt to change topics, I’d very likely wind up having a meltdown, which would then take days (or more) to recover from.

I wasn’t always so sensitive in those respects and easily flew above the radar by subconsciously masking my traits (as happens, that backfired in a multitude of ways, including increased need for support).

Presently being a Level 2 doesn’t mean that I’m more intelligent than a Level 3, or less so than a Level 1.

These levels have absolutely nothing to do with intelligence, nor capabilities at large — instead describing our need for support/accommodations in order to function in our (neurotypically-biased) society.

The DSM describes differences in ‘social communication’ and ‘restricted interests & repetitive behaviors’ (the latter of which are affectionately known as special interests and stimming in the autistic community). This is a change from the old paradigm, in which those with Aspergers were widely viewed as being more intelligent due to superior intellectual development, a perception that has not died.

Public perception has very real effects.

When Elon Musk publicly disregarded the changes of DSM-5 in its home country, he portrayed himself as someone more intelligent than the autistic community at large; and the continued use of the term has negative ramifications on other autistics.

He could have used the updated terminology, helping to erase harmful stigma via a show that’s been a US culture staple for decades — but instead, he perpetuated it.

Sure, maybe he didn’t know, but given his fame and legendary genius status it’s safe to presume that someone gave him a head’s up, or he got there on his own; particularly since the change is nearly a decade old, and he’s been based here since 1995.

Also, Nazis.

The term ‘Aspergers’ got its start in Germany, 1934, when Dr. Hans Asperger discovered Nazi psychiatry.

In a 2018 New York Times article, researcher Edith Sheffer described his work on autistic children: Some laud Asperger’s language about the “special abilities” of children on the “most favorable” end of his autistic “range,” speculating that he applied his diagnosis to protect them from Nazi eugenics — a kind of psychiatric Schindler’s list.

But this was in keeping with the selective benevolence of Nazi psychiatry; Asperger also warned that “less favorable cases” would “roam the streets” as adults, “grotesque and dilapidated.” Words such as these could be a death sentence in the Third Reich.

And in fact, dozens of children whom Asperger evaluated were killed.

Yes. You read that right.

The term Asperger’s is directly aligned with the murders of dozens of autistic children — all for the sake of Nazi eugenics, or wealthy white dudes deciding who’s “fit” to live life on Earth.

Another horrifying passage from the NY Times article: One of his patients, 5-year-old Elisabeth Schreiber, could speak only one word, “mama.” A nurse reported that she was “very affectionate” and, “if treated strictly, cries and hugs the nurse.” Elisabeth was killed, and her brain kept in a collection of over 400 children’s brains for research in Spiegelgrund’s cellar.

Sooooo, that’s where the term ‘Asperger’s’ comes from.

It’s Time to Do Better

It’s disturbing to know what’s really going on here, but that’s the reason why we DO need to acknowledge it. (Image of Hans Asperger via Nature)

While I understand that it’s hard for people to just have their diagnosis terminology switched on them, the changes in the DSM-5 were made for crucial reasons (more than discussed here) — and the update is having a really hard time gaining awareness.

This lack of societal knowledge means the continued perception that those with “Aspergers” are more intelligent/capable than those identified using the term “autistic.”

I want to emphasize that not all autistic people are aware of these US-based changes, and there are also situations where continued usage is logistically necessary. I don’t want to imply that individuals, autism organizations, and social media figures with the term in their branding are bad for not having changed.

We can only do what we can do. I get it.

But Elon Musk is not a likely-to-be-cash-poor non-profit or YouTuber, he is literally the richest person in the world and he’s also one of the most well-known.

He could have easily helped, but instead he did the opposite — and while that (alone) isn’t worth vilifying him for, the move shouldn’t just be overlooked.

It needs to be learned from.

Another quote from that NYT article brings this point home: Does the man behind the name matter? To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither. His definition of “autistic psychopaths” is antithetical to understandings of autism today, and he sent dozens of children to their deaths.

Other conditions named after Nazi-era doctors who were involved in programs of extermination (like Reiter syndrome) now go by alternative labels (reactive arthritis). And medicine, in general, is moving toward more descriptive labels. Besides, the American Psychiatric Association has ruled that Asperger isn’t even a useful descriptor.

She wraps up the essay with a request to the reader: We should stop saying ‘Asperger.’ It’s one way to honor the children killed in his name as well as those still labeled with it.

People act like psychology was built on the backs of giants, but it wasn’t.

Asperger may be the most offensive of offenders, but he’s far from the only toxic contributor.

It’s time to start looking at things from a more inclusive, efficacious, and empowering perspective.

We need to truly acknowledge that everyone’s worthy of life, even the (many) demographics that struggle to thrive in a society that was not built to include us — and moving away from this harmful term is one step towards those ends.

P.S. Nikola Tesla is rolling over in his freakin’ grave for being associated with such a perpetrator of societal ills. (You big Edison!)

7 Things I Learned from 5+ Years of Solitude

Isolation can be transformative and empowering, here’s how.

Photo by Drew Coffman on Unsplash

It’s been one year since the pandemic started, a year that’s brought significant changes for just about everyone.

Some of us have been overly trapped in a house with too many people; but others of us have been all on our own for quarantine, left alone with our minds, and a pet, if we’re lucky.

Going from a life of being out in the world, talking with people, experiencing novelty and freedom — to being all alone in your apartment, like, every day, can be immensely difficult.

In October of 2015, I had my last day working at a health company that had been extremely compassionate in regard to my sick time. I had been crashing right after work most days for years, and the days where I couldn’t leave the house at all had started to outnumber the days that I could.

Since then, it’s been a life of treasuring the days where I do feel good enough to leave the house.

Photo by Anthony Tran on Unsplash

I’d learn that I had a B12 level of 132 pg/mL; the doctor noting that I’d have been paralyzed within a month, and dead within a year. A year and a half later, having been tested for just about every other ailment — I was diagnosed with fibromyalgia, explaining the pain all over my body, but leaving me with many unanswered questions.

And, finally, just this summer I was diagnosed with Level Two autism, a mind-blowing diagnosis, for sure, but one that has brought me the answers to those questions, tools, and a literally like-minded community (if only online, for now).

So, when the pandemic started, I was already on year four of near-complete solitude — I have been completely by myself for the vast majority of my hours, for five freakin’ years.

At first, it was really hard. Not gonna lie.

But this solitude has brought me treasures, as well. Transformational ones.

May we all be infinitely more awesome versions of ourselves by the time the world reopens, ready to rock its socks right off.

Our world constantly feeds us information to process and react to, and while letting all that go might be difficult; its absence can be immensely centering, especially with some intention and effort.

Though the arrival of vaccines is exciting, the reality is that many of us (especially my fellow high-risk peeps) are probably going to be solo’ing it up for some time — so I thought that I’d share the gifts that isolation has brought me, and how to get at ‘em.

7 Things I’ve Learned from Extended Solitude

Photo by Afonso Coutinho on Unsplash
  1. The most important relationship is the one we have with ourselves. For a lot of us, it’s easy to be thrown into everyone else’s world, letting other people occupy our mental spaces rather than focusing on cultivating our own internal peace. It’s important to engage in activities that help us feel closer to ourselves; for me, it’s spirituality and making art (ta-da) — maybe for you, it’s gourmet cooking whilst listening to personal development podcasts. But whatever it is, making it happen regularly is absolutely worth the effort.
  2. Self-care, like meditation and daily movement, is not optional. Similarly, it’s important to hold ourselves accountable for taking care of our minds and bodies, which can be tricky when your whole routine is thrown out of wack. Luckily, to get rolling all you need is a bit of floor space, maybe some direction and inspiration from YouTube, and willpower derived from knowing that self-care leads to happier and more productive days — making you your best you.
  3. It’s okay to follow your own rhythm. Our society pushes a fast-paced lifestyle that starts at 6:30 am, and even if you’ve been laid off, or your hours have become more flexible; it’s likely you’re still feeling pressure to keep it up. Take this opportunity to learn about your own internal rhythms — see what time you wake up natural, be busy on a Sunday and chilled out on Monday, discover what truly works for you.
  4. Authenticity is key to sanity. I first started falling ill regularly over a decade ago, and the forced solitude helped me realize that I wasn’t being my full self when around others, that I feared doing so, and it made me anxious, almost constantly, which I hid, constantly. After a few months alone, unobserved, unguarded, unedited; I found myself being sillier, as well as feeling more joy and peace, and I’m better able to bring that into my relationships when I do have the energy to connect.
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    Notice how you are alone, and how you are with others — is there a gap? As the great Brené Brown says, “If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief,” which is something I can personally vouch for. Mind the gap, my friend, then close it good.
  5. Societal conditioning is utter nonsense. All this time alone, without being persistently exposed to and influenced by the views of others, being able to control the amount of conditioning I’m exposed to — has helped me to really see our society for what it is. (And, very often, it’s not great.)
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    Inspect your psyche and motivations, how much is “mother culture” affecting your goals, assumptions, and beliefs? How does advertising affect you? Social media? Keep your eyes peeled for internal reactions (especially shame) when encountering aspects of socialization and our society, observe how conditioning can be an insidious mofo.
  6. The key to never being bored is caring more. My mother always used to say, “If you’re bored, you’re boring,” which irritated me as a restless teen, but I’ve come to see its wisdom. Engaging people are always engaging with something, learning about their new passion, supporting the people around them (if only from afar), and generally cultivating their curiosity at every turn — and the key to it all is caring.
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    While happy hours and concerts allude, opportunities for caring are still abundant, and one is never bored whilst giving a shit about something. (It just can’t be done.) Whether it’s getting involved with your community somehow, taking up a new hobby, or exploring your obsession with some random topic you love with all your heart; bid adieu to boredom and get it get it.
  7. It’s crucial to know what company uplifts, and who drains you. When availability for interaction is limited, it’s especially important to be particular. Once I started examining how I felt after talking with people (in-person or otherwise), I realized that I very often wound up in a negative space afterward; realizing that they hadn’t asked me a single question, that an errant comment was making me insecure, or that I was feeling otherwise diminished, less seen.
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    My experience was certainly colored by my unconsciously deflecting to mask my autism (and other coping methods), but this isn’t an uncommon issue. Some of us are keener to hold space, and others are keener to take it — it’s important to find balance in both our behavior and in the company we keep. The forced space of quarantine can help ween out potentially toxic relations, leaving more time for connection that uplifts.

While I hope that this isolation is broken sooner than later, I try to remember the overwhelmingly external times in my life, the days I had too many places to go, too many people to talk to — and remember that those times will come again, and they’ll likely send me into a light nostalgia over my present situation.

Let’s make the best of being here, now, shall we?

May we all be infinitely more awesome versions of ourselves by the time the world reopens, ready to rock its socks right off.

We got this.

Photo by Brooke Cagle on Unsplash