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. ❤

Autistic Adults and Autistic Parents Need To Come Together

There’s a knowledge gap, and it needs to be filled.

August 21, 2022

Photo by Suad Kamardeen on Unsplash

There’s a divide of understanding within the autistic community, one that can get quite contentious online: autistic adults and parents of autistic children. I think a root of the problem is society telling parents they’re responsible for raising kids in a manner conducive to doing things in neurotypical ways, the “normal” way, and parents at large face a lot of homogenized expectations and judgment for noncompliance.

But when a child has different neurological wiring, a different neurotype, normal expectations and activities can actually overwhelm their nervous system, making it even more difficult to do things like process language and verbalize. And autists are expected just act like we’re not experiencing this kind of agitating or even painful neurological overwhelm when we are, something that leads to all kinds of trouble, like autistic meltdowns, which are terrifying. During meltdowns, sometimes it truly feels like my brain is going to catch on fire from all the misfiring and pressure, then finally just explode.

They. HURT. And we don’t choose them. And we don’t get to decide when they end.

These kinds of internal autistic experiences have been treated as if they’re irrelevant, as if autists just have behavioral issues and need to learn how to “act normal,” something that makes us even more vulnerable, and we’re already unnecessarily dying decades before our peers.

Bridging the knowledge gaps between us and allistic (not-autistic) folks needs to happen and it won’t without help from parents of autistic children — the hard truth is that you’re the ones society listens to, not us, and we’re dying from the societal apathy. We need parent allies to really listen and to help our voices be heard.

Here are 10 takes on this gap from other autistic adults, starting with a couple of autists who are also parents of autistic kiddos:

  1. “I fall into both of these categories. I wish that there was more understanding of the different communication styles rather than people jumping down each other’s throats all of the time. I wish that functioning labels would be done away with and that the parents would stop speaking for us and listen to us instead.” A.M.
  2. “I am autistic and so are my children. I’d like parents of autistics to understand that they need to pay attention to what is going on and how their child is interpreting the experiences around them. As much as they can at least. They can’t understand truly but they can watch out for say, how a child might be handling someone having a crush on them or trying to interact with them in some intimate way. 
    .
    And then they need to not approach their autistic kid with morals and judgments the kid may very well not understand. I was raised in the church and things just never made sense, yet when my parents would address whatever the issue was, they’d do it through the filter of something that already didn’t logically make sense to me. Your kid won’t understand what you want or mean if you aren’t speaking a language they understand. They may have to set aside what they think they ‘know’ and approach things differently, potentially without some things (like religion) being the primary measuring stick of a moral code.” S.L.
  3. “That when they talk bad about my autism, they are talking bad about me personally, because I don’t see myself as separate from my autism.” A.F.
  4. “That [autistic adults] often do really understand what it’s like to be an autistic child and we can help them if they listen to us. We can provide insight from an autistic perspective that they may not even consider as a possibility. Yes, parents often do know best, but when your child has a different neurology than you, why not ask the people who share that neurology for help? After all, we want what’s absolutely best for our future neuro-kin generation and will fiercely do whatever it takes to protect them. […]
    .
    Saying things like “my child is more severe than you are” or “you can’t speak for my child because you’re not the same” isn’t helpful. We understand their experience even if it’s not the same as ours. And if you’re saying that me (a mostly speaking autistic person) isn’t the same as your nonspeaking autistic, you’re right. I don’t know that experience because I grew up speaking using my mouth words. But then why not connect with other nonspeaking autistics who do know and understand your child from that perspective? There’s so many types of autistic people in the world; you’re bound to find one that has a similar experience to your child.” M.S.
  5. “They are not the ones with autism and that they have to help that person develop a system/ anything to move through life. I just feel like I was told how to feel most of my life and now I’m on my own idk how to process my actual feelings now that there’s ppl who want to listen. 🤷🏽‍♀️🤷🏽‍♀️” K.N
  6. “Understanding that we aren’t doing ‘bad things’ for the sake of being malicious 99% of the time. I remember having meltdowns and being told I was ‘ungrateful’ and throwing a ‘tantrum’ when the reality was it was like something else had taken over me and turned me into an anger monster. I was never in control until I came down from it and I was blamed for ruining outings and embarrassing my parents. Same thing with not being able to or not wanting to do a task or go to an event. They took this as me being defiant. The reality is they never listened to what I was actually saying when I said no and instead framed me as a defiant child. Talking to your autistic kid on a more peer level will help you communicate better and they will tell you what they need. You just have to listen and learn your child’s language.” S.S.
  7. “That it’s often a journey to understand our own feelings and symptoms. We don’t always have the answers, but that doesn’t mean others should speak for us.” C.T.H.
  8. “What bugs me the most is the idea that something is ‘wrong’ with their child. This whole grieving how they expected their child to turn out or how they wanted their life to be or their kids life to be. Disabilities are not bad, don’t need to be fixed, your child doesn’t need you grieving the loss of the abled child you wanted. Secondly, stop exploiting them on social media to ‘help other parents’ or ‘spread awareness’. Thirdly, I wish they would realize that societal rules are completely made up. Your kid doesn’t need to speak, use fake pleasantries, have fun at amusement parks etc to be loved, respected, or to enjoy life.” C.H.
  9. “That everyone is different. I really wish that was emphasized more. There is no ‘stereotype’, everyone still has their own personality.” S.G.
  10. “That we aren’t unintelligent just because we can’t/don’t communicate the same way. I’ve noticed the same problem within the deaf/HoH community; if you can’t or don’t speak (or can’t speak well) people don’t take you seriously or assume you must not understand normal speech. I can understand you just fine even when I don’t know how to respond or am unable to.” B.N.

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.

How Breathing + Cold Exposure Can Improve Your Life

The Wim Hof method activates the mighty endocannabinoid system, the body’s wellness regulator.

Meg HartleyNov 10 · 4 min read

Photo via Instagram

This article was orignally published on ILLUMINATION, I very much appreciate claps (you can do 50!) and follows over @ Medium! 

There are lots of bizarre-sounding health fads out there, and many of them aren’t as effective as they are attention-catching, but I can say from personal experience that the Wim Hof Method (WHM) is one that actually works.

It’s just breathing exercises plus cold exposure, but it’s been hailed for improving, or even curing, all kinds of health conditions, as well as improving general health and well-being — and there’s a science to back it up.

Here’s a list of benes: More energy, boost the immune system, anti-inflammatory, better sleep, increase sports performance, workout recovery, autoimmune disease relief, arthritis relief, post-treatment Lyme relief, COPD management, migraine relief, MS management, asthma management, lower blood pressure, improve metabolism, and relief from fibromyalgia symptoms.

I’m in it mostly for that last one: helping ease the hellacious pain that is fibromyalgia.

I can’t report that I’m totally healed, but after 3–4 months of doing their daily breathing + cold shower technique, my pain decreased immensely. I’m unable to do the cold shower portion in the winter due to bone pain, but just the breathing alone still keeps fibro pain below a 3, when it was 8’s and up prior winters. And in the warmer months when I can do the cold shower portion, I don’t even think about fibromyalgia! It’s been a godsend.

Though this exercise is great for anyone with a body, I especially recommend that my fellow fibro-fighters and spoonies of all kinds — including mental health warriors and the neurodiverse — keep reading, even if your condition wasn’t listed this could help.

The breathing exercise also just feels great, delivering pleasant tingling sensations throughout your body; it’s both invigorating and relaxing, plus my back and neck usually pop with ease afterward.

The Science
Photo by Mathew Schwartz on Unsplash

The reason the WHM is so effective is that it activates the endocannabinoid system (ECS) which is best known for being the bodily system that works with cannabis, but it’s so much more.

The ECS is in charge of regulating virtually all of the other systems in our body, so it’s big deal, and it’s criminal that doctors don’t study it in school. Science has shown that atypical endocannabinoid levels are associated with many chronic illnesses, several of which are listed above, as well as forms of neurodiversity — like AutismADHDTourette’s, and others.

In 2018 researchers studied the WHM on Wim Hof himself, finding increased activity in the areas of the brain that are “associated with brain mechanisms for the control of sensory pain and is thought to implement this control through the release of opioids and [endo]cannabinoids.”

In other words, the breathing exercises and the cold exposure cause an increase in ECS activity, allowing it to better regulate the body’s functions and get unbalanced aspects in check.

Again from the study, “The practice of the Wim Hof Method may lead to tonic changes in autonomous brain mechanisms, a speculation that has implications for managing medical conditions ranging from diseases of the immune system to more intriguingly psychiatric conditions such as mood and anxiety disorders.”

How to do the Wim Hof Method
Photo by Tim Goedhart on Unsplash

Completing the WHM should take 15–20 minutes, all you need is this free video and a functional shower (or another form of cold exposure). The video will guide you through a 3-part breathing exercise, which will be repeated 3 times.

Here’s how it goes:

  • The first element involves circular breathing, which is simply breathing into your belly, letting it extend, then pulling that breath into your chest, then releasing. The video will take you through 30 reps, showing you an orange bubble that inflates and deflates with you to help keep time.
  • In the second bit, Hof will tell you to let all of your breath out and to refrain from breathing in for as long as you can. It’ll give you 60 seconds, then 1:25 as goals — but don’t feel pressured, just fast-forward the video when you need to breathe in, or pause if you can hold out longer.
  • The third portion will have you do the opposite, breathing in as much as you can, then holding the air in for 15 seconds before releasing — if you haven’t felt the great bodily feelings yet, they’ll come for that part.

Then it’s time to hop in a freezing cold shower! It’s hard at first, but they became refreshing for me after a few weeks — you’ll adjust to the cold temperatures too, you really will. (Which expands options for outdoor swimming fun…)

In the meantime, if the cold water is just too cold, try starting it at normal temps and then moving to cold. Start out with whatever your body can handle, and work up to 2–3 minutes.

Happy Hoff’ing!

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?

Image for post

Here’s What Autism Looks Like


It’s about the inner.

Dec 15, 2021

Interest in (and acknowledgment of) the autistic adult community has gone up lately, which is wonderful. People at large are starting to understand that even though we’re different, we still have a lot to contribute; and autistic-led shows like Everything’s Gonna Be Okay are helping people to understand just how wide the spectrum can be.

But there’s still a lot of confusion in the allistic (not autistic) community about what autism “looks like,” usually in reference to how a person appears, but you really can’t tell if someone’s an Autist based on observation.

In addition to the truly infinite variety of ways autism presents, many of us have been taught to mask our traits; so knowing what’s happening inside the person, the reasons behind our behaviors, is essential to recognizing autism in someone.

Being autistic is about having different wiring, literally experiencing the world differently due to neurological differences; resulting in varied sensory perception, ways of relating to the world, and reacting to it differently.

A comic strip by Rebecca Burgess popularized a way to visualize this internal experience that’s been embraced by the autistic community. It explains that most people think that the autism spectrum is a linear thing — a spectrum from “not autistic” to “very autistic” — but it’s actually more like a color wheel of various autistic traits, with Autists affected more and less in different areas (as well as times in our life).

Here’s that one:

vs.


I later came across another very helpful expression of the concept, created by autism assessor, Matt Lowry, LPP. I particularly like the use of medical terminology and the way it succinctly elaborates on each section:

Lowry’s information describes atypicality in the following areas (some info added for further understanding, but the list isn’t exhaustive):

Interoception: Internal senses (hunger, thirst, going to the bathroom), awareness of emotions, alexithymia.

Proprioception: Sensing body position, dancing, walking on toes, spinning, dyspraxia (clumsiness), motor control.

Exteroception: Sensing the outside world, hypersensitive, hyposensitive.

Stimming: Repetitive movements and sensory seeking for energy regulation.

SpIns: Special Interests, intense research, information hunger, collections.

Executive Functioning: Hyperfocus, demand avoidance, hygiene, autistic inertia (difficulty changing tasks), working memory, verbal problem-solving.

Relationships: Rejection sensitivity, masking, bonding through SpIns, misunderstandings.

Communication: Echolalia (repeating others’ words), palilalia (repeating own words), echopraxia (repeating others’ behavior/movements), scripting, eye contact, infodumps, body language, tangential conversation.

Emotional Intensity: Meltdowns (neurologically different than “tantrums”), shutdowns, situational mutism, hyporeactivity.

Note: These things also add up to big-time fatigue (mental and physical), and often mental health issues, like anxiety, depression, and C-PTSD.


I wanted a version that allowed me to mark my trait measures so I can better communicate my internal experience, so I sketched one out that clearly segments the areas — allowing me (or any autistic person) to mark how much atypicality is presently experienced in each trait segment:

Image by author

I originally made it for use with my therapist, but have also started tracking my trait levels for the purposes of both curiosity and managing problematic aspects. (I just got started, but already find it interesting that engaging in more stimming behavior — energy regulation — seems to be linked with experiencing less emotional intensity, which makes sense.)

For an autistic person to mark atypicality levels, right-click to save so it can be marked in a drawing program, or print it out and grab a marker. Consider the different aspects of each trait section and how atypical experience is at this time, then mark levels appropriately, like so:

Image by author

I also imagine it’ll be useful in other realms of life when needing to explain to others how and why something is causing atypical issues. (If you’d like to have it on an object to help explain differences and accommodation needs, like a work mug, click here.) I hope it’ll help my fellow Autists feel more understood and allistic folks better understand.

(Note: Images and article reviewed and approved by Rebecca Burgess and Matt Lowry.)

7 Must-Know Autism Terms for Autists and Allies

A lil’ knowledge to help you be an effective self-advocate or ally

Meg HartleyJul 12 · 7 min read

Originally posted on An Injustice, I appreciate claps (you can do 50!) and follows over @ Medium! ❤

For people who are Autistic, knowledge about our neurotype — how our brains work — is incredibly empowering; and for those who care about us Autists, knowledge is empathy.

The present public perception of Autism is based mostly on neurotypical (NT) observations of our behavior. Focus is on the social implications, with people often referring to how we “seem,” but the internal Autistic experience is far more crucial for people to understand.

We need people to understand how it *physically* feels to be Autistic. It’s the only way our society will learn to stop unwittingly harming us, and better learn to include us.

Since we live in a society that was literally designed for a different neurotype, a different kind of brain, we are persistently expected to do things in a way that works well for most people’s brains — but that very often conflict with our own cognitive processes.

It causes very real problems, even for those who can mask their Autistic traits.

For me personally, it feels like pressure in my brain during tasks or environmental stressors (light, sound, conversation). I was able to pretend it wasn’t happening for years, but eventually, that masking took a toll on my brain, and I started having unexpected outbursts; which eventually turned (back) into full-blown meltdowns and body-wide physical pain.

In addition to the horror of the meltdown itself, which can last hours and involve self-harm, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also potential consequences for actions during the meltdown, as well as shame.

And in addition to adapting to NT processes, we have to constantly observe and adjust our behavior to the NT norms. It’s just too much.

Additionally, since Autistic representation in the media is very narrow and often misleading; people at large have no idea what it feels like to be of Autistic wiring, making it even harder for us to explain, especially given that so many of us struggle with efficient verbal communication and executive functioning difficulties.

Too much of the onus is put on us, and far too little on those whose neurology isn’t struggling with the task at hand. We need to be met halfway. (Desperately.)

I hope defining these terms in language that aims to explain how these experiences physically feel will help both Autists in better articulating their own experiences—dealing with neurological malfunction is confusing, to say the least! — as well as helping NT allies better put themselves in our shoes.

Of course, I can only describe how my experiences feel, the adage of “if you’ve met one Autistic person, you’ve met ONE Autistic person” always applies.

Knowledge really is the beginning of all empathy, it can create a bridge between people who have a chasm of differing life experiences. One person speaking up in an otherwise indifferent room can make all the difference.

7 Must-Know Autism Terms for Autists and Allies

Photo by Alexandra on Unsplash
  1. Executive Malfunction: This term refers to our struggles with planning, remembering information, problem-solving, organization, and time management. This is one way to get that painful brain pressure I was talking about. For me, it generally happens whilst trying to use technology, verbalizing, remembering, filling out forms, doing finances, or when in Autistic burnout (see #5), freakin’ anythiiiiiiing. Ugh. It can be very problematic and can lead to expensive errors, dangerous meltdowns, and further loss of functionality — and yet, an executive malfunction does not indicate intelligence deficits, we’re just struggling to do things in a way that wasn’t designed for our different neurology.
  2. Meltdowns: I’ve gathered that to the observer, Autistic meltdowns look like a “tantrum” or “freak out’’; but what’s happening is actually neurological overwhelm, often due to sensory overload. Despite how it looks, it is a very physical issue, not just emotional. *And they. Are. Terrifying.* For me, at first, it feels like a huge overflow of anxiety in my body, as if on a malfunctioning rollercoaster and desperately want off, but I’m trapped…then I just kinda, for lack of a better term, go berserker. I want to stop, to behave rationally, but I can’t. It’s awful, almost like watching myself from the outside.
    .
    And in addition to the horror of the meltdown itself, which can last hours and involve self-harm/suicidal ideation, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also the potential consequences for actions during the meltdown, and crushing shame, which can lead to worse. So, when an Autistic person says they’re fending off a meltdown, it’s crucial to take our needs seriously, because this issue is a very big deal and, at large, very misunderstood by the Allistic, or not-Autistic, community — especially regarding Autistic adults.
  3. Shutdown: These happen for the exact same reasons and need to be taken just as seriously as a meltdown, even though it may not seem as serious. An Autistic shutdown is the brain’s way of directing all that overwhelm inward instead of outwards, causing the person to become non-responsive. For me, these usually happen after a meltdown, like my brain is just…done. (I’ve heard them described as something experienced in place of meltdowns as well.)
  4. Going Nonverbal: When this trait is severe, this is completely literal; some Autistic people are nonverbal their whole lives. For me, this feels like my brain’s built a steep mountain around itself for protection, and eeeking any communication out (even typed) feels, and often is, simply insurmountable. It’s usually just when I’m dealing with burnout, but can also happen for brief periods when I’m overwhelmed.
    .
    For me, at the worst (*knocks on wood*) I can still mumble to myself, or my dog, but the words are likely to come out wrong and/or slurred and take immense effort to get out — which can lead others to very unfortunate conclusions, in addition to overexerting my already-taxed brain, which leads to further malfunction. So, via the hard way
    , I’ve learned to just not verbally communicate on those days!
  5. Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definitionAutistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
    .
    Everything from navigating the internet, to making calls, and driving can become a HUGE deal when you’re in burnout; it’s a very disabling condition made worse by blank stares and suspicion when we try to explain why we aren’t able to meet usual expectations. I’ve been fighting this mofo for over a year, but have experienced it for a duration as short as a few weeks, and have talked with other Auties who report it as short as a few days. Rest is the only way to get out of it, but think about resting your brain…it’s not exactly something our world is arranged for, is it? Ooofta.
  6. Special Interests (SpIns): Clinically, this is where they accuse us of having “rigid/restricted interests,” but more knowing researchers are pointing out they’re our best shot to career success. In fact, that’s precisely how I’m writing this article despite burnout! These obsessions (Neurodivergence and writing here) seem to nourish our brain, like they somehow fuel it. They can be lifelong, or change with time, and most of us have more than one.
  7. Stimming: Another community favorite! It’s described by clinicians as “repetitive motor movements,” and it looks like us moving our bodies differently than NTs, or otherwise doing things to engage sensory feedback — like playing with goo, staring at sparkly things, or touching velvet. These actions soothe the brain in a similar way to SpIns, and are often reactions to environmental, mental, or emotional stimuli.
    .
    It’s common to have different stims according to what happens, for example, I tend to handflap when I’m overwhelmed, I wiggle my fingers in front of my forehead when I’m thinking, and when in shutdown I love me some visual stimming. Some of us can mask the movements, but it’s bad for our brain function, so please exercise consideration and empathy before insisting we refrain. (See #1–5.)
Stimmmmmmmmy awesomeness. FYI: Enjoying staring at it doesn’t mean you’re ND! NTs stim too, usually in different ways, stress balls and pen-clicking, etc — but whatever calms the brain works, I would not be at all sad if NTs also carried around sparkly goop and such! It could even help normalize us. (Image via Giphy)

With so much change needed it can be overwhelming, but it really does happen with one piece of knowledge at a time — individuals create change in this world. It’s the only way it can happen.

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

How I Went from “Normal” to Homeless

…and the valuable lessons I learned from the experience.

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!)

Photo by Ussama Azam on Unsplash

It was a long and tumultuous journey that led to me living in a semi-functional 25-year-old Camry for the end of 2017, and much of 2018.

It was also wildly unexpected.

I’d graduated college with a decent GPA, had a semi-impressive career in marketing, threw charity fundraisers, volunteered and held positions on non-profit boards, cared for my people, and made sure they knew it — I had trouble managing sometimes, but did alright and was giving life my all.

If something happens to you and you proverbially fall, even if it’s not your fault, the government — whom you’ve given 30% of your life’s income to — will not catch you.

And, up until my late-20’s, I seemed pretty healthy. I knew I’d had a cacophony of seemingly random issues my whole life, but they didn’t interfere with things too much and were basically hideable.

Then, in 2009, I attended a get-together that left many of us with H1N1, or the “bird flu.” (I didn’t have the wherewithal to get to the hospital, but several of their cases were confirmed.) After that harrowing experience, the aching body pain never went away; and while I’d always seemed to be more exhausted than those around me, it got much worse.

Unfortunately, I’d have been screwed even if I’d missed that pandemic, as there were already several other health issues going on.

In my 7-month “bed,” feeling like hell. (Image via Instagram.)

Physiologically, I was a walking timebomb.

For one, I was born with a B12 deficiency, which was prolonged by a homozygous MTHFR mutation. This means that my nervous system was slowly demyelinating, losing its protective cover, and causing random issues throughout my body.

Some of these are kinda funny in retrospect, like my not being able to taste salt very well, which led to me using it excessively. (In my teens, movie theatre coworkers once pranked me, dumping a “ridiculous!” amount of salt on my popcorn while I was away — I didn’t even notice. Mmmm.)

Others weren’t funny at all, and still aren’t.

These issues mostly had to do with mental health (and unhealthy coping mechanisms), but those issues had another massive factor — undiagnosed autism.

I wouldn’t know it until 2020, but I’m a great example of what’s presently called, “the female autism phenotype,” which can present in any gender. Though there are many differences in this presentation, the key difference is having a better ability to adjust to social situations by doing something called masking, essentially faking normal; which helps cope in the short-term, but also creates a host of mental and neurological health issues.

I have another mutation that makes me high-risk to pandemic flus, so the physical trauma of H1N1 certainly played a role, but that aching pain I had, often diagnosed as fibromyalgia, is common in women with autism.

I finally got my fibro diagnosis right before homelessness, about a year and a half after the B12 deficiency was diagnosed — them telling me, “132 pg/mL is very low, you’d have been paralyzed within a few months and dead within a year.”

Home sweet home. (Image via Instagram.)

By my B12 diagnosis, late 2015, I was already basically on bed rest, but stabbing myself every day with a form of B12 called hydroxocobalamin — after learning the hard way that the cheaper, more common, cyanocobalamine can lead to panic attacks, yikes — was leading to many of the random symptoms to drop away.

Things were starting to improve, but since I was missing key diagnoses, I didn’t know what I needed to do to heal. I regularly overdid it, which would result in weeks of make-you-cry pain — but I had no idea that’s what was happening because the symptom flares can come up to 5 days later. Plus, it’s also really hard to tell when I’m pushing it, and the weather is a huge factor; which took over a year of seasons to sort out on my own.

It was maddening. (To be honest, still is. Fibro is no freakin’ joke.)

I was in that bed for about 20 months.

I wish I could tell you that’s how long it took me to get better, but that’s how long it took me to lose the bed.

I did everything I could to earn, but I just couldn’t keep it up. I’d get more productivity hours as time progressed and my intensive wellness regimen did its thing, but that first year I had a marketing client that could afford just 9 hours a week; and I was repeatedly overdoing it trying to do that and keep up with life, my never-ending UI case (that looked statistically bleak due to my being young-ish, 33 when I applied), doctors appointments, prescriptions, etc.

When you’ve got very limited storage, organization is key. (Image via Instagram.)

Shit, just going to the grocery store very often led to public meltdowns that meant recovery days of no productivity and horrendously intensified symptoms.

I had a handful of good health days that coincided with an event or visitor so got to go out into my old world a few blessed times (usually aided by self-medicating with wine) — but the vast majority of my days, I was all alone in my isolated apartment, all day, all night. (Homelessness aside, I’ve basically been in lockdown since 2016.)

I regularly went several months without seeing a friendly face, or even talking to someone on the phone.

The idea of ‘peopling’ was nearly always just too much. Plus, I didn’t have very many friends in my newish city; most of the people who loved me were back home in Alaska, hundreds of miles away.

So, it was just me and me, alone in that apartment.

Me and me, trying to heal. Trying to get through physical therapy. Trying to remember to take too many pills that did too little. Trying to navigate systems that very literally make my head feel like it’ll explode. Trying to stay on an intense allergen-free plant-based diet on a teensy budget.

Trying not to cry all day, every day.

And trying like hell to avoid homelessness.

On that last one, we didn’t succeed.

The Bottom Falls Out

Three years later, seeing this still makes my body clench and my heart ache. (Image via Instagram.)

Though more (very part-time) clients teamed up with donations from friends, acquaintances, and total strangers, as well as my very patient landlord, to keep me homed for nearly two years — I lost that studio apartment in the summer of 2017.

I’d been told by several health professionals that moving from rainy Portland, Oregon to a drier and hotter climate would help my condition, so it seemed serendipitous when a friend I hadn’t seen in well over a decade offered to let me stay with her in Los Angeles county.

This outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, had been.

That climate advice was spot-on, and my symptoms decreased dramatically in the hot summer weather; I don’t believe I’ve had to use my walker even once since the move, which I’d been largely dependent on. However, living in someone else’s home had the opposite effect on my undiagnosed autistic brain, and I went into what I now know is autistic burnout; leaving me holed up in my dark, quiet, A/C-free room most of the time.

The housing situation ended a week or so after I climbed out of that then-mysterious mental hole, and a couple of days after I was directed to Skid Row, where I discovered the public housing waitlist was 11 years — and there was a lottery to even get on the list.

Once it really hit me that it’d finally happened, that I was really homeless, my mental health became dangerous to my safety. Having lost my mother to her own hand and fearing the same fate, I checked myself into a mental health ward for the second time since the health crisis started. (But that’s another tale.)

And when my 72-hour hold was up, my 7-month misadventure in homelessness really began.

A Whole New World, Sort Of

From unable to leave home, to no home to go to. (Image via Instagram.)

In spirituality, we often say the phrase, “in the world, but not of it.”

Homelessness is kinda like that.

The outside-looking-in sensations of living with undiagnosed autism were infinitely multiplied by being in the same spaces as others, while also not being like everyone else in it — having a secret likely get me scorned, shamed.

I used face cleansing clothes and dry shampoo to help keep me looking like I belonged in our society, but I’ve never felt more like an outsider. (And I’ve felt like an alien my whole life, so that’s pretty bad.)

Though warmer, this outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, was.

Every shelter I called was full, which is normal — if you haven’t caught on by now, our safety nets are broke, really effing broke — so I was lucky to get a spot in one. It happened to be Thanksgiving, which felt like an extra blessing, as I’d been fearing the holiday all alone. I was overwhelmed with the sensory environment, being around people, and my usual symptoms; so I mostly just listened as they talked.

Some shared their relief for a night off the streets, talked about how rough it can be. Many had been in-and-out of homelessness since childhood, so this was a pretty normal experience for them. I thought about my experiences of financial struggle growing up, which weren’t even in the same league. Things were scary sometimes, and it did have a long-term effect on my mental health; but I always had a roof over my head, I always had nutritious food to eat.

It helped set a grateful tone for the experience, after all, at least I had a semi-functional 1993 Camry to sleep in — providing shelter, storage, some privacy. Many of these (kind, funny, truly alive) women didn’t even have that. Plus, coming from a community where people were generally having an easier time financially; I had people helping me along, helping ensure I wasn’t literally sleeping on the street.

But, the attitude of gratitude can only go so far — it was still the hardest seven months of my life.

My days were spent trying to improve things, often working until the array of bodily symptoms and mental fatigue would start to make me cry. I didn’t have an unlimited internet plan on my phone, so most of my time at night was spent lying down in the back seat of my car using meditation and visualization to take myself to a more peaceful place.

Of course, many other nights it was just crying, feeling terrified, and wondering how I’d ever get out of that mess.

I always put the window shade “funky side in,” in hopes of being more discreet. (Image via Instagram.)

I’d eventually pull myself out of homelessness when the symptom relief of warmer weather coincided with a referral for a job working for someone who was incredibly understanding about the accommodations I needed, which wound up leading to regular writing work.

And in the summer of 2019, nearly four years after I originally applied for disability payments; I was awarded about two of those years, anyways — allowing me to repay loans that helped me survive, get a working vehicle, and finally move to a place that’s a bit more compatible with my extensive sensory needs.

I’m still disabled and life still has its challenges, but even 2020 had nothing on living in my semi-functional car whilst broke and horribly ill.

It’s been almost three years since it ended, but I’m just starting to feel like I’ve moved on.

It was both traumatic and eye-opening.

It changed me.

It changed me in negative ways, like increased C-PTSD symptoms; but it also changed my view of the world, my level of consciousness in regard to what really happens in our society, and my perception of what I can handle, what I can overcome. (Plus a real random one, just ‘cause life’s lessons can be like that.)

5 Lessons from My Homelessness Experience

My masking behavior is clear to me in the caption, which stings. This was a torturously dark night: an actually very broken foot, and a broken car — I was wrong about the low bill too. (Image via Instagram.)
  1. I’m a bit of a badass. When you have an invisible disability, people are constantly questioning the authenticity of your condition, as if they’re thinking, “It can’t really be that bad.” (Without the #spoonie community all the gaslighting may have driven me off the edge.) It’d gotten to me, just as all the years of strife before had gotten to me. I felt meek.

    Then, while homeless, I fell and shattered my foot, but walked on it for 10 days because it hurt less than the rest of my body — so I figured I was fine.

    That’s f**king fierce. (Fibro fighters and autistics are fierce in general, and society has no clue.) And I stayed pretty darn positive too, I remember a drug store employee commenting on how I was smiling despite needing crutches and thinking, “You have no idea what else I’m smiling through right now.”
  2. There are heroes and helpers everywhere. There were so many times I hit obstacles that seemed completely insurmountable, but people continuously helped me out.

    My home/car died repeatedly and a few people fixed it for cheap, one even doing it for free; and when I lost the apartment, friends, acquaintances, strangers donated enough to get the $500 car itself, then helped keep me in gas and internet-giving coffee purchases, as well as connecting me with creative work and donating occasional hotel stays that helped revive my spirit and get a good night’s sleep.

    Despite being so far away from the people who care about me, despite it being a physically solo journey — I didn’t go through it alone. As the woman who created the great Fred Rogers would say, when faced with scary things, “Look for the helpers. You will always find people who are helping.”
  3. But people who leave piss on public toilet seats are the scum of the earth. That’s it, that’s the lesson.
  4. There are two Americas. And, even though it was still really effing hard, I’d been living in the comparably easy one. When you’re living in the easy one, things can “seem fine” for folks, but this is a result of the other America being overlooked, ignored, and full-on lied about. If you’re still in the easy one, please try to learn from advocates what it’s really like for people in poverty, and please call others out when they say disparaging things about those who need help.
  5. There aren’t safety nets, not really. I thought there’d be some kind of program to help disabled homeless folks find stability, someone who could help me find an adjusted place in our society. But the homeless center heralded as best resource in LA county was more like a massive mostly-empty waiting room outside of mostly-empty offices that offered pretty normal apartment listings, and a communal shower. I couldn’t even get mail there.

    I appreciated the showers, don’t get me wrong, and the humans there were wonderful; but the way “our federal safety nets” had been described to me all my life, I thought, you know, there was something to catch us when we fell. It’s not true. Our programs are archaic, under-funded, and frankly seem to be on the verge of collapse.

    If something happens to you and you proverbially fall, even if it’s not your fault, odds are that the government — whom you’ve given 30% of your life’s income to — will not be there to catch you. That is a toxic societal myth, and retelling it has very dire consequences for our most vulnerable people.

Sending you good vibes in dealing with whatever scary thing life’s sent your way, may we all find and be the helpers in this world.

A happy day, homed at lasssssssst! Thank you for reading, hope your day’s a goodie. (Image via Instagram.)

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