It’s about brain functionality and mental health, not “feeling special.” 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!) Seven months… More
How I Lost All My F-cks is more than a book. It’s a 3-part experience, lasting one month, that will help you to shake off harmful societal conditioning and find a version of yourself that knows how to feel satisfied, how to have some freakin’ fun, how to prioritize the things that really matter, and how to be present during them.
Part I is a 30-day meditation challenge, teaching you various methods of mindfulness meditation, which I’ve been practicing for close to two decades, as well as daily reflection questions and a space for a short journal entry. It also includes several concepts and tales meant to leave you in an uplifted and thoughtful state, pulling from sources like psychology, philosophy, the nature-oriented spirituality of the Tao te Ching, and more.
While you’re finding your meditation groove, you’ll also be rising to the challenge of Part II’s Fuckless Adventures; choosing 20 dare-like experiences (out of 30) that are aimed to incorporate more authenticity and vulnerability in your life, connect (safely) with others, and immerse you in a whole lot of fun. This section also includes a handful of inspiring tales from lives lived boldly, learning how one Prince’s truth expanded the rights of millions, how Frida Khalo overcame tremendous odds whilst fully expressing herself all along the way, how an octopus helped renew one man’s spirit, and much more.
And while you’re meditating and adventuring, you’ll also be reading Part III. This section elaborates on this “fucklessness” business, often using entertaining tales from my, uhm, “colorful” life to ground the concepts and ideas described within it. It’ll take you through learning to care about all the wrong stuff (as we’re conditioned to do), teen shenanigans, serendipitous magic in a philosophy class, near-death meets chronic illness, adventures in jail and mental institutions, homelessness, and more.
Together, it’s an average of 20 minutes a day or so, longer if you get creative with it.
The world is presently a confusing place, and this book will help you to better orient within it by teaching you to center in yourself. By the end of your fuckless experience, you’ll feel like your 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’m presently seeking representation, so stay tuned for the release of How I Lost All My F-cks! (Support on the socials is also much appreciated, @howilostallmyfs across the board 🙏❤)
Isolation can be transformative and empowering, here’s how.
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.
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.
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
- 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.
- 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.
- 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.
- 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.
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.
- 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.)
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.
- 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.
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.
- 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.
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.
Authentic representation matters, especially when the demographic is so vulnerable.
Like Sir Anthony Hopkins, I am a late-diagnosed autistic person.
And when I tell people that I was diagnosed with autism at 37 years old, they very often don’t know what to make of that fact — some even hinting that since I don’t “seem autistic,” that I might be misdiagnosed, that the highly-experienced mental health professional who spent hours diagnosing me was incorrect.
This experience is rather typical for late-diagnosed adults.
The reasons for this are multitudinous, but can largely be filed under “autism updates in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition” and “stigma and misrepresentation,’ which is where Sia’s movie Music comes into play — as the film is highly problematic in that regard.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
In 2013, the DSM-5 redefined autism when it combined five developmental disorders (including Asberger’s) under Autism Spectrum Disorder, a term contested in the autism community, with many favoring the less problematic, and more descriptive, Autism Spectrum Neurotype; but a change that’s generally been supported in both the scientific and autistic communities, though some do call for more revisions to help autistics find diagnosis (and its tools) before traits become more problematic.
The changes were completed nearly a decade ago, but are still being integrated into the often-archaic mental health system, and autistic females are still thought to be extremely underdiagnosed.
One of the reasons for this underdiagnosis is that females are often adept at a coping method called masking, which involves suppressing natural reactions in an often-unconscious attempt to “seem normal.” (It should be noted that this presentation, called the ‘female phenotype’ is another debated term as there’s great evidence that any gender is capable of this — Sir Hopkins, an accomplished actor, is a very likely example of a male who could likely sort out “acting normal” via observation and imitation.)
Though masking can be very effective, this coping method often becomes problematic for the autist’s mental and neurological health.
Masking is highly associated with autistic burnout; a condition which very often results in a severe physical and neurological incapacitation (including going nonverbal) that can last for months, or even longer, and is (unsurprisingly) associated with suicidal behavior.
So, while one might think that if autistic traits don’t persistently disable, they shouldn’t warrant a diagnosis — it isn’t that simple.
Hiding the way one’s brain functions requires an immense amount of neurological effort, and, sooner or later, it comes at a cost; and if society keeps getting the same stereotyped representation, autistic people will continue to be underdiagnosed due to them, and their therapists, not seeing autism as a potential diagnosis.
We shouldn’t live in a society where medical professionals often follow media and societal expectations over science, but we do, so we need the media to take portrayals very seriously.
The Representation Issue
To explore the second matter, “stigma and misrepresentation,” we’ll first turn to the #ActuallyAutistic movement.
Actually Autistic is a movement that was started by the autism community on Tumblr in 2011 and has since been spread to other social media platforms, which now has millions of posts across TikTok, Instagram, Twitter, Facebook, and other social media platforms.
The movement was started because people in our society, at large, have a very narrow idea of what autism looks like, and it causes a lot of really harmful issues for autistic people.
The thing is, autism does not look or “seem like” anything — and the media is telling people it does.
We’re individuals with unique experiences, each affected by different areas of the spectrum; plus, many of us are masking our traits in order to survive in a society that seems determined not to take us seriously.
As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”
To further explain, autism also can also manifest in all kinds of ways because the autistic neurotype affects many aspects of neurological function.
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter.
Most think of the spectrum as a linear construct that goes from ‘mildly autistic’ to ‘very autistic,’ but the autistic experience is actually more akin to a color wheel representing many different traits and behaviors within the areas of executive functioning, perception, social abnormalities, movement, language, monotropic mindset (focus on special interests), sensory processing, and more.
So, Rain Man might have been highly affected in the areas of language, monotropic mindset (counting), and social abnormalities.
Sam on Atypical might have a very similar profile, and, more importantly, expressed in a very similar way.
The same goes for Sean Murphy on The Good Doctor; as well as Abed in Community and Sheldon Cooper on The Big Bang Theory, who arewidely perceived as being autistic.
Therein lies the problem.
When physiological conditions are repeatedly portrayed in the media in a similar fashion, it creates a broad misunderstanding and stereotyping in regard to what conditions actually look like, and, crucially, what responses are actually helpful, and which can (often unintentionally) harm.
This gap in public perception and awareness leads to a lack of emotional support, denial of crucial services, and even misdiagnoses — which is a huge deal as 72% of autistic people are considered high-risk for suicide.
How autistic people are represented matters.
It needs to be accurate, and it needs to involve us.
The Trouble with ‘Music’
So, you might be saying, “What about Sia’s movie? That’s different, it’s about a female.”
Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter. (This controversy resulted in the filmmaker deleting her account after publicly apologizing.)
Makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person.
Additionally, Music appears to be a female version of a similar profile: speech problems, monotropic mindset (music), and problems with social awareness — with a large helping of differences in movement, resulting in highly-problematic stimming imitations performed by a neurotypical actress.
And, again, it’s expressed in a very similar way, Music is a lot like Rainman…but with more pizazz.
There needs to be a wider representation of the autism spectrum, so that people may gain a better idea of all the different ways we can appear in life, and stop unwittingly harming us.
To give an example of a potential presentation that defies stereotypes, I’ll cite another fictional character dubbed likely autistic by many autie fans: the wonderful Leslie Knope, of Parks and Recreation.
Knope is a passionate and hilarious woman who only wants to talk about her special interests (politics, her friends, waffles, and Friday Night Lights), can behave aggressively (often inadvertently), has great difficulty understanding boundaries, and though she’s extremely compassionate and caring, the emotional reactions of others often surprise and confuse her, which continuously causes issues. (She’d have a really challenging time in the “real world,” I guaran-fucking-tee it.)
Or, better yet: the similarly dynamic, complex, and utterly delightful Matilda on Everything’s Gonna Be Okay, played by Kayla Cromer — who is actually autistic!
As Matilda’s a recent grad, maybe in future seasons we’ll see her dealing with day-to-day adult autism issues; trying to make it in an office without masking herself into burnout, dealing with sensory issues whilst need to “be professional,” managing grocery shopping with executive functioning issues, and the challenges of stunted success due to simply not “seeming normal.”
And while I could do with less self-deprecating humor from Matilda in regard to autistic traits, I love knowing that the performance is at least coming through an actress who knows what it feels like to behave in ways that are often misunderstood; and it’s also just so healing and inspiring to see an actually autistic person rocking their chosen field.
Though I still watch The Good Doctor and I wish Atypical hadn’t been canceled, now it has been done: Cromer, and Everything’s Gonna Be Okay, have proved that an autistic person can lead a television series.
As a result, if a new show or film comes out without true autistic representation, it will almost definitely get shit from the #ActuallyAutistic community.
Which brings us back to Music.
Personally, I’m not black-and-white on if only autistic actors should play autie characters; but they absolutely have to be extremely knowledgeable about why we do the things we do, they should understand how it feels, physiologically — and no one knows that better than someone who is actually autistic.
This is especially relevant for a character like Music, who is completely nonverbal (which doesn’t mean vacant, as many presume) and has very visible stimming traits.
We Have So Much to Offer, Please Help Enable us to Do So
I truly cannot overstate the importance of our society becoming more aware of the fact that autism can appear in a myriad of ways, especially in adults.
It’s extremely difficult to live in a society that was literally built for a different kind of brain, that persistently overwhelms our neurology; a society that disables and disregards us, and very often when there’s a simple way to just work with us, if only people would choose to try instead of dismiss.
And I believe, I hope, that they would choose to work with us if they just knew how; and if they just had any idea of what we’re actually up against.
The autistic community hasn’t been able to get people to understand on our own; unsurprising as there’s a lot working against us, and the vast majority of us are exhausted and platform-less.
We need the media’s help with this. We need you to start telling our stories.
Our actual stories, in all their complexity and variety.
They need to be heard so people will start taking us seriously, so we can get the support we desperately need. When you start listening to autistic adults, hearing our harrowing tales of trying to survive in this incompatible world — that horrifying statistic about 72% of us being high-risk for suicide starts to make a lot of sense.
We are truly up against so much, even if we don’t “seem autistic” in the moments that you’ve witnessed.
But our struggles don’t mean we have nothing to offer the world; as wonderfully demonstrated by Sir Hopkins, Miss Cromer, and so many others, we have much to contribute.
We just need people to start asking and learning how to work with us, rather than (often unwittingly) working against us, so that we may live up to our true potential; and while readers are encouraged to peruse the internet of #actuallyautistic, we desperately need the media to take the lead in ensuring accurate and authentic representation of the vast autism spectrum.
So, makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person. Fund actually autistic projects, hire actually autistic creatives, and seek actually autistic consultants.
Nothing about us, without us.
No gluten, dairy, soy, or caffeine; low sugar/carbs, as organic + plant-based as possible—on a budget, with low prep time.
There are many reasons for becoming a clean eater, the best ones being around simply wanting to feel better about how you eat so you may live a life that’s as thriving as possible.
But, for me (and perhaps most), it was a lifestyle change made out of health necessity.
I did an elimination diet, which is when you cut out various allergens to see how it affects your bod — while I also started eating to eat cleaner, enacting a plant-based diet.
It turned out that nixing gluten, dairy, soy, and caffeine, while also severely restricting sugar/carbs helps me feel better.
Like a lot better.
I, unfortunately, turned out to have several health complications; but, nonetheless, improvements post-diet-switch were so stunning that it seemed like I’d found my cure.
After a lifetime of feeling like I had to think around a corner, or through sticky cotton candy, my foggy mind became clearer. The stomach discomfort that sometimes got so bad it felt like I was being clawed from the inside just disappeared.
My energy, though still unimpressive due to those other issues, vastly improved. Additionally, over time, my skin cleared up, my dry scalp issues faded; and I stopped being preoccupied with food and eating, finally being able to maintain a healthy weight, which had been an issue for decades.
Give it six months, just six lil’ teeny tiny months, and I swear you won’t want to go back.
But HOW do you actually do it?
I’ve always been a veggie-lover, and I highly value conscious living, but it was still a tricky adjustment the first couple of weeks. The taste aspect was a bit of a bother; but for me, there was also a learning curve in regard to how to manage the change.
I remember trying to figure out a new coffee routine — decaf was apparent, but there were several options for nut milk, and I’d always done sugar in my java, but all the sweeteners had sugar or scary ingredients I cannot pronounce, which breaks the first rule of clean eating.
It felt like every aspect of my eating and drinking had to change, and it was overwhelming.
Fortunately, through years of trial-and-error, I’ve gotten it all sorted out (within my constraints, anyways); and can now say with full honesty that I love eating this way.
10 Tips to Make the Switch
- Look organic/clean first. The price difference can sting, so read a shit-ton of information on pesticides and additives —then head straight for organic when you get to the store. Just pretend like that other stuff isn’t even there.
- Chop and separate. Put on a playlist or podcast and chop your vegetables for both cooking and salads, storing separately; enabling quick prep when it’s time to eat.
- Start with a craving, healthy it up. For example, if you’re craving greasy Chinese food, try your hand at cooking up some veggie-heavy fried rice (more veg than rice) with coconut aminos. Also, keep your eyes out for seasonal veggies that meals can be centered around.
- Cook once, eat several times. If you’re on a budget, be it financial, energy, or time; leftovers are your friend, so make big batches. My favorite cook-once is yellow curry (Mae Ploy!) with shit-tons of veggies and jasmine rice. Zucchini spirals make the best pasta, but gluten-free noodles have also gotten tastier in recent years; just be sure to follow the directions precisely, and taste-test for texture before straining.
- One nutty decaf, and spice ‘er up. Oatmilk (creamiest)+ splash of almond (tastiest) + decaf with infused cinnamon = dreamy. Just mix Ceylon cinnamon into the grounds, using no more than ~1TB in a standard-sized pot, as it’ll overflow if the mixture gets too fine.
- —with two handfuls of nuts. Organic mixed nuts make an easy, fast, filling and nut-ritious (heh heh) breakfast; of course, you might need more than that, just eat ‘till full. For the most nourishment, aim for a sugar-free unsalted mix that includes Brazil nuts, which are high in selenium. (When my budget grows, I’d like to enjoy them with raspberries and sugar-free coconut yogurt, if I can find some …)
- Cacao is the shit. For me, letting go of sugar was the hardest part, but my tastebuds adjusted surprisingly fast, rendering old favorites overwhelming; and cacao has kept those cravings satiated since. My go-to is cacao baking chips blended with coconut oil, shredded coconut and whatever else looks yummy/is around, like fruit or nuts — sprinkling on a little sea salt and/or cinnamon adds a luxurious-feeling touch.
- If you’re gonna splurge/cheat…Adding veggies to takeout extends the nom while making it more nutritious. Gluten-free bread isn’t the real stuff, obviously quite carby, but a very tasty treat when in dire need of a sandwich. Low-sugar-vegan-ice-cream is a thing, it’s not cheap but it’s delish. Just so you know.
- Watch your condiments. They can be an afterthought when making so many changes, but are often full of sugar and additives that add up fassst.
- Handpop your corn. The microwavable kind is full of all kinds of toxic nastiness; but plop some coconut oil into a stovetop popcorn maker, add organic kernels, twist the turny-thingy for a few minutes, sprinkle on a little sea salt—and you’ve got yourself one healthful-yet-delightful snack for some tasty movie fun.
Changing one’s lifestyle can be overwhelming, and food choices can be especially difficult; but as you find new favorites, feel better in your body, look better in your clothes, and get that skin a glowin’ — your new foodscape will become more and more satisfying.
And if you’re already on this mission, please share any favorites and/or tips that you’ve got!
But how tf do we do that? Here’s some ideas, from one trying autie.
It can be really overwhelming to be autistic in a neurotypical society.
Things quite literally weren’t designed for our often extremely sensitive nervous systems, causing all kinds of potentially-serious issues; and people very often misunderstand us, making NT assumptions about our behavior. (Like, how hard is just asking a direct question? 😅)
Of course, there’s a bunch of other bummers, but that’s not what this here page is going to be about.
There are also many cool things about being of the autistic neurology, unique ways of being that help add color, innovation, and life into the world. We are also more powerful than most folks recognize, especially when we’re in an environment that is conducive to our different sensory needs.
I believe that we can thrive, that we can find a way to work with (and influence) society, and that we can be our whole, best, selves.
I’m not yet a master on how to thrive autie style, as I was actually just diagnosed seven months ago and have been in-and-out of autistic burnout for months — but I’ve been obsessed with figuring out how to thrive as my authentic self for nearly a decade, after far too much living as a half-me, striving to “just be normal.”
Fuuuuck it. Normal means neurotypical, and we’re just not. In order to thrive, we need to sort out a few things; and we need to do them on our own terms, whenever possible.
Here’s what I got, so far:
- Own our needs. Different needs are often disrespected by others, so it’s crucial to analyze what our biggest triggers/drains are and know we have a right to live a life that accommodates them. If you don’t already know the #spoontheory — learn it, know it, live it.
- But don’t forget to own our shit. If we use autism as an unnecessary excuse, acceptance will never happen. While letting other people push us is a great way to get ourselves into #autisticburnout, we must know when to push ourselves.
- No people-pleasing. When peopling can be so persistently hurtful and confusing, it’s tempting to try to be what others seem to want us to be — but we’re often not great a figuring out wtf that is, for one, and two it just leads to complications and being seen as less. Fuuuuck it.
- ID strengths and weaknesses. Autism generally has perks as well as weaknesses, like hyperfocus and an ability to understand the nuances of topics. Finding means and tools to amplify the former and better manage the latter is wildly empowering.
- Calm down list. It’s not fun for anyone to be overwhelmed, but with us it can lead to meltdowns and neurological upset, so it’s important to know how, precisely, to mellow. Making a calm down list with things like favorite stims, special interest activities, and comforting rewatch shows, is a great way to regain control.
- Get organized. If you don’t already have a method that works for you (or several), find a way to manage your life that truly works for you. Personally, I use a desk calender, Cardsmith on my computer, and the Strides app. I found it overwhelming, but lots of auties love the Tiimo app too!
- Be healthwise. It’s not uncommon for auties to also deal with comorbid illnesses, and we’re also more likely to have gene mutations like MTHFR, which can cause complications; so it’s wise to read up about how we can better manage our bods.
- Empower ourselves with knowledge. Learning about how the autistic brain works enables us to identify triggers; for ex., before knowing I was autistic I was extremely sensitive my executive functioning difficulties, resulting in feeling bad about myself really often — but now when they happen I know my brain’s just tired, and I best be mindful with my energy.
- Connect with other auties. While it’s thrilling to gain understanding and control of our minds through methods like books, articles, videos, and scientific research; communicating with other auties about how to live better brings answers, connection, and community that only two-way communication can provide. Online platforms, like Facebook, and hashtags like #actuallyautistic or #neurodiversity are great resources.
- Get into self-improvement, especially around self-acceptance. Yes, you might roll your eyes, and you might cry — but there’s no way to learn to fill our own cups if we don’t believe we have anything to offer. And. We. DO.
I’ll be posting more content like this on my new Instagram page, Thrive Autie Thrive. I so welcome your connection over there too!
Experts say shame leads to continued maladaptive behavior, here are a few steps to stop the cycle.
Originally published in the Medium publication, Invisible Illness. (Apologies for the highlighting, it’s from that platform and there doesn’t seem to be a way to undo it…Wordpress 🙄)
Have you ever felt shame after making a mistake? How did it feel? And, what did you do with that feeling? According to science, odds are that it felt just miserable, so you repressed it, and then wound up repeating the err.
But while shame can feel unpleasant, it’s just something that happens in life; just like an occasional screw up is part of life.
And shaming is something that just happens in life, especially when people are emotionally triggered. While expecting a friendly explanation in response to an offensive mistake is unreasonable (due to the immense power of our ‘fight or flight’ response) — we do have power over what we do with our shame.
For example, I’ve been trying to recover from a neurological crisis, which often leaves me trapped inside my tiny studio due to an inability to handle the light, sun, noises, and unpredictability of the outside world — but I’ve been doing increasingly better, even getting back to my beloved morning sun puddle meditation.
Today was a freakishly hot January day, even for Southern California, and I gratefully got to celebrate with an hour-long break to take a quick dip in the (still freezing) ocean, then soaked up the gloriously hot sun for a bit.
I needed it so bad, and it was sheer freakin’ bliss.
And yet, I got the ickiest feeling right after posting about my dreamy experience on Insta — a feeling I’m all too familiar with as a disabled person: shame.
My mind suddenly filled with haunting words from my past, we well as many aimed at others in my situation; words that amount to the sentiment that it’s not okay for disabled people to enjoy ourselves, as if managing to appreciate life makes us less disabled, less in need of support when we do need it.
I’ll admit, it’s tempting to go on a diatribe about how defeating it can feel to regularly share your struggle to only have people react resentfully when hearing of a good day, but this article isn’t about how misleading surface observations can be, and it’s not about the value of learning to be happy for others.
This article is about shame.
I’m doing my absolute best, which know in a very concrete way; because, like so many disabled folks, I keep winding up back into bodily malfunction due to pushing myself too hard.
And why do I do keep doing this?
I sometimes feel like a bad person due to my inability to perform as other adults perform in our society. People have given up on me, and it made me want to give up on myself.
It made me feel like less. Capable of less. Worthy of less.
That’s what shame does.
It’s not the unpleasant-but-effective sting of guilt, the feeling of remorse caused by fucking up and wishing we hadn’t upset things. And it’s not the valuable experience of repentance, in which we reflect on our wrong-doings and commit to correcting our behavior.
Again from Scientific American, “Shame makes us direct our focus inward and view our entire self in a negative light. Feelings of guilt, in contrast, result from a concrete action for which we accept responsibility. Guilt causes us to focus our attention on the feelings of others.”
Shame is the mofo that makes people conflate the mistake with who they are. It’s when folks give up on themselves; deciding that since they’ll never do better, they may as well not try at all. It’s why people decide having a negative effect on society is better than no effect at all.
Sociological researcher Brené Brown professes, “Shame is much more likely to be the source of destructive, hurtful behavior than the solution or cure. I think the [associated] fear of disconnection can make us dangerous.”
And work done by other scientists backs her up — the Association for Psychological Science found that “inmates who feel guilt about specific behaviors are more likely to stay out of jail later on, whereas those that are inclined to feel shame about the self might not.”
Because shame is such an unpleasant feeling, it’s often repressed; which leads to a lack of accountability, of never reflecting on the mistake, nor seeking counsel on how to not repeat it.
And in a society like ours, where taking accountability for a mistake might get you thrown under the proverbial bus — this is happening a lot.
It’s very likely that even you’ve felt too bad to acknowledge an err, dooming yourself to repeat it. (Who hasn’t?)
Maybe you’re even doing it right now, let’s see — how do you feel when you think about the last mistake you made?
Listen to the language of your immediate response. Do you feel like a worse person for it, or do you simply wish you could do it over again, but better?
Another helpful way to spot shame within yourself is to reflect on the areas of your life that make you feel like you’re less in other people’s eyes. When (and why) do you feel diminished in life?
Here are a few tried-and-true suggestions to help get it to bugger off and change your ways:
1. Own it.
For example, “I have several disabilities and this presently results in an inability to perform a ‘normal’ amount of responsibilities, despite this I still sometimes allow myself (very) occasional leisure breaks instead of striving to get more done; this brings me shame because I can’t meet up to society’s expectations of a ‘good’ adult.”
2. Look for a mistake.
If you find that you’ve erred, identify the behavior that led to it, and seek outside advice to correct that behavior. That can be found in more articles like this, trusted humans, and/or professional support, like a therapist.
If you don’t, precisely identify why it wasn’t a mistake. (If you can’t specifically identify this, your ego may be involved.) Ex., “Taking an hour to recharge in nature is good for me, it inspires me, which actually helps me write/work; especially since autistic burnout is a big part of my neurological troubles. I’m also a human being who is worthy of the pursuit of happiness, and I truly know that I am doing my very best to contribute to society and meet my responsibilities. Everyone needs a break sometimes.”
3. Try, try, again.
If you’ve erred, apologize without attachment to being forgiven, or otherwise do what you can to make it right. Either way, keep your awareness peeled for repeat situations, watching your reactions, and trying to adjust them. Repeat, persistently working to change this behavior. (And be kind to yourself in the process, change very often takes time. All we can do is our very best.)
Also look for the various ways it appears in our society, sometimes blatantly, and sometimes with more subtlety (perhaps even with an unintelligible smile) — you’ll very likely observe that it’s pretty freakin’ ubiquitous, with all kinds of opportunities for more effective change.
As Brown says, “I believe the differences between shame and guilt are critical in informing everything from the way we parent and engage in relationships, to the way we give feedback at work and school.”
Meg Hartley studied sociology and psychology extensively in college and has been engaged in self-education in the 15 years since. As a recently-diagnosed Level 2 autistic woman who’s masked large portions of her personality for decades, she’s also all too familiar with the feeling of shame (and its highly counterproductive results).
Ableism doesn’t usually come in the form of teasing, it comes in the form of being written off.
Originally published in the Medium publication, Invisible Illness. (Apologies for the highlighting, it’s from that platform and there doesn’t seem to be a way to undo it…Wordpress 🙄)
I recently met someone for the first time during an autistic burnout, which is when our brains are at their very least functional — making just about everything an immense, and often undoable, task.
But I’d been improving and was feeling confident I’d be able to have at least a short conversation without much trouble; plus, we’d Zoomed, he knew all about my autism diagnosis, and he seemed very compassionate so I figured he wouldn’t write me off if something did happen.
Unfortunately, the very beginning of the conversation should have been a warning that perhaps I’d been a bit naive in my assessment. He entered my patio and asked about the sign on my door, which asks people not to disturb me. (A very necessary effort to help lower autistic meltdowns, as people had been essentially walking right into my apartment and surprising the fuck out of my very-sensitive nervous system.)
He made a vaguely disapproving face and asked, “What’s that sign about? You seem so kind…”
I had a hard time explaining the sign, taking several minutes to explain something that a happier brain just allowed me to write in one sentence. He didn’t seem to understand, and instinctively I reacted by engaging in a masking technique — changing the topic instead of making sure he understood.
Attempting to ensure people understand what I’ve verbally communicated often winds up in both a lack of improved comprehension + some triggering comment like, “Yeah, I already got it…,” all annoyed-like, even though they’ve clearly demonstrated that they do not. It’s simply maddening, like I don’t quite speak my native language.
But talking about common interests was going great, anyway, so I was sure I’d at least made a friend; then a neighbor glared at me and slammed her patio door shut (I struggle with verbal volume control), and I immediately burst into tears.
My body twitched and I knew my hands wanted to shake about, stimming the tension out of me; but I suppressed it, laughing at myself instead, which sent all that energetic overwhelm inside me. It was just a minute or two before his words started to become incomprehensible to my ears, and that scary white light in my brain started flashing. I had to ask him to leave, with great kindness — but also in a hurry, knowing a meltdown (or worse) could come if not.
I thought it was all good as he left with kind well-wishes in parting, but a few days later it became clear that I did not make a friend. I’d been written off, yet again. And for a 20-minute conversation, when we’d been chatting for weeks.
It’s very frustrating to be judged for the things your malfunctioning brain and/or body are responsible for, especially when you’re striving to do the absolute best you can.
Not being able to welcome strangers into my space without notice doesn’t make me unkind, and having trouble verbalizing doesn’t mean I lack valuable perspectives.
And while I’m at it — not being able to hike doesn’t mean that I don’t appreciate nature, and it also doesn’t mean that I’m lazy. Not being able to work normally doesn’t mean that I don’t miss it, that I don’t crave the nourishment of being able to connect with others andcontribute to a community.
Having pain that you cannot see doesn’t mean that I’m crazy, or a liar. Being prone to depression doesn’t mean that I don’t value and honor life with my whole soul. And needing medical cannabis doesn’t make me “just a stoner.”
People write off the disabled, and it’s not like how we see on TV; they’re not calling us names and pushing us down, it’s far more subtle and incidieous. (And much of the time we don’t even look disabled!)
The cruelty in our society doesn’t only come from the things overtly said and done.
Far more frequently, it lies in the things left unsaid.
Messages communicated with a mere disapproving glance or rolled eye, a change in the vibe of the relationship, messages left unresponded, insults accompanied by far-fetched claims at “just teasing,” exchanged glances that demonstrate you’ve been disparaged behind your back, and things said making their way back to their target.
It’s cruel anytime, but when it’s done in response to things totally out of someone’s control, problems that already weigh them down and make life seem impossible — it’s fucking reckless.
So, if you know someone struggling due to a misbehaving brain and/or body; please, for the love of all that is holy, just give them a chance to be the best person they can be while dealing with their difficult situation.
Ask more questions. Truly listen to the answers. Try to find more essays like this, advocacy essays written by people who’re actually battling the same health issues.
Disabled people very often have to do and/or sacrifice a lot in order to socialize (so much more than abled folks understand), and that’s in addition to what we go through afterward, to recover.
Can’t you just take a little time to give us benefit of the doubt?
Imagine that trying to enjoy the world outside of your tiny studio apartment (even your precious patio) involved a very high chance of your brain becoming overwhelmed to the point of malfunction; the sounds, brightness, unpredictability — all threats that could potentially result in meltdowns and a repeat of seizures, which you find terrifying.
Every time you verbally communicate there’s a ~50% percent chance of the words coming out wrong, and/or with tears. Even text-communication is often overwhelming. Basic executive functioning tasks, like routine cooking, become immensely challenging. Generally, you have all the energy of a sloth.
You are in autistic burnout.
And you’ve been in and out of it for six months.
Then you have a precious good brain day. It aligns, not surprisingly, with a good health day — you also have fibromyalgia, which is common in autistic women. It’s the winter solstice, so you take your emotional support dog to a nearby lagoon for some nature time.
Yes, it was only 15 minutes on the way to pick up your grocery order, and yes getting some sun did make your skin itch in a strange electric way — but it was a beautiful walk, so so very worth it.
You saw light dancing on water, herons perched on floating Christmas-tree structures, discovered your newly-adopted dog (Foxy) hates dust but has the cutest sneezes in the world, and watched her make a little girl’s day as they said hello, both all wiggly and excited at life.
After you put your groceries away at home, you’re amped to find that you still have some energy and cognitive function left to work — so you sit down to write, delighted at the sound of your own hands quickly tapping away at your keyboard.
But then a far more unpleasant noise starts, yet again.
At first, it’s just some music down the street, you hope it’s a passing car. But instead, it gets louder. The words on your computer screen begin to scramble in your head, you can no longer sort out their meanings, let alone write more of them.
The music gets even louder.
You shut your door and tiny window, so now there’s less noise but almost no natural light. It’s hard to decide if that’s more of a sensory relief or depressing factor. You turn on a lamp and your stimmy mind-happy-making music, try to focus. But it gets even louder. You give up on work and turn to streaming televised art to calm you down and drown it out.
But their music is louder than your TV. In your apartment. With the window and door shut.
Your brain is threatening to go white again, feeling like it could explode, waves seeming to pass through your vision— you know you can’t keep living like this. Literally. Cannot.
You head outside and find a car parked sideways in the road (blocking access to the street), with a nearby scooter playing music so loud you feel your teeth vibrate from 100 feet away.
There are 3 or 4 men standing around the car, their bodies postured in an intimidating manner. Bystanders stare at them, seemingly irritated but not saying anything. Your mind tries to tell you confronting them might not be safe, but you can hardly hear your own thoughts, fuck you can hardly think them — so this just causes more anger.
As you pass the blaring speaker, you lose control of your body and it squirms uncontrollably, which gets the men’s attention. You ask them to please turn it down, saying you can’t work; but they can’t hear you over the noise. You try again, your voice cracking, your hands shaking. They turn it down a bit. You walk to the end of the street, turn the corner so they can’t see you, then stop to try and get yourself together.
They fucking turn it back up.
You’ve lost it. You feel your eyes going steely and realize you’re already beelining towards the man who answered for everyone, your voice is saying things, you’re not even sure what.
He just smiles, even lets out a small laugh.
The man turns it down again, then stares at you, arms crossed, chest out. Your response is squeaky and shaky, trying to explain autism and sensory processing and meltdowns and how this loudness is stealing your life.
Which is what always happens when you get like this.
They quietly laugh. And smile at you like, “you strange silly thing,” then deny having done so if you manage to call them on it.
And every single time, it makes you want to give up entirely. Literally.
Your whole body starts shaking uncontrollably, you realize there are like 10 people now staring at you now (your neighbors!), and you can’t really understand what their faces are saying. (Fear? Pity?) You walk away, unable to hide the stimming and shaking, but holding your tears in until you collapse in your apartment.
Then you do your best to shake it off, knowing letting yourself spin-out would result in a full meltdown. (They are the same in adults. They are a complete loss of control, and they are horrifying.) Luckily, you’re very practiced at pretending you don’t feel like your whole world is on fire.
You stim it out, reflect on all the good points of your (comparably good) day, then use the adrenaline from the incident and your inability to recognize your emotions for the good — managing to have a relatively nice mellow little Yule evening.
Of course, the next day you’re useless, recovering. Your work can’t get done. The vegetables don’t even get chopped, which is fine because you’re too nauseous to eat them. You feel worthless, like the dirt on the bottom of that quietly laughing man’s boots.
But the day after that you wrote this, anyway.
You know your immense strength. You know your whys. You have your passion and drive. You know how to appreciate the good, and you have the will to fixate on it.
So you just keep on keepin’ on.
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.
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:
- “The premise of the Taker story is ‘the world belongs to man’. … The premise of the Leaver story is ‘man belongs to the world’.”
- “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.”
- “I have amazing news for you. Man is not alone on this planet. He is part of a community, upon which he depends absolutely.”
- “The obvious can sometimes be illuminating when perceived in an unhabitual way.”
- “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.”
- “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.”
- “Donald Trump can do a lot of things I can’t, but he can no more get out of the prison than I can.”
- “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.”
- “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.”
- “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.”
- “The mythology of your culture hums in your ears so constantly that no one pays the slightest bit of attention to it.”
- “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?
Originally written on April 29, 2017, a year and a few months after I nearly died from a congenital vitamin B12 deficiency (maintained with help of the aptly-dubbed MTHFR mutation), which sent aggravating fibromyalgia symptoms to completely horrifying and utterly debilitating.
After a few years of continued health-improving obsession, I’ve gotten much better, but rereading it just now still made me cry.
I hope it helps someone out there in the worst of it feel hopeful and less alone:
Due to a problem with my nervous system, I am disabled and chronically ill. My symptoms often become incorporated into my dreams, sometimes it’s almost funny: a man getting an electric foot massage on my back when the machine shorts out. (Okay, weird/scary, not that funny.) More often, it’s just me trying to keep up with the dream and sorely falling behind.
I just woke up from a miserable one. A repeater. Familiar people are telling me that I’m faking it. That I’m pretending to be weak to get attention. That I’m just irresponsible and lazy and need to try harder. Or worse, they roll their eyes and give one another a knowing smile like, “Won’t this be fun to dish about later?”
It’s bad enough constantly having to explain what’s wrong with me and why I can’t do x, y, and/or z just like everyone else — but then to have convince them that you aren’t telling falsities, and to do so when your brain can’t even recall basic information reliably — I can’t explain how awful it is. How demoralizing. How it just makes a person want to give up.
But then to also do it every night in my dreams? Shiiiiiiit, this has to stop.
I clearly still have issues with people from my not-so-distant past, that’s where I can do work. Forgiveness. Self-love. Continuing to hang with empathetic folks.
But the real problem lies with society. The people in my dream aren’t “bad” guys. They are very “normal” people. We, as a society, still don’t have a strong understanding of invisible illness. (Even though it’s pretty darn common.) And we definitely aren’t aware of how to behave with empathy in regard to it.
Just because you can’t see a person’s pain doesn’t make it less real. To us who deal with invisible illness, it’s all the more real: because we’re so often received with disbelief and even bitterness in place of compassion. Can you imagine? No, like, really try to imagine.
Take a couple of minutes: Imagine waking up in agony, trying to shake off dreams like I just explained. Knowing that you have maybe 3–4 usable hours, that this agony is as good as you’ll feel all day, that it’s just going to get worse. Pushing through everything that you can get done despite your symptoms — which is never even close to the amount that needs to be done. As far as keeping up with life goes, you’re fucking drowning.
And then the pain levels rise so high that you can’t think straight. And then the fatigue levels get so high that just taking a bath is daunting. The television, and all sounds, feel abrasive; so all you can do is lie there until you feel tired enough to pass out despite the pain. But once you actually get to bed that’s rarely the case, as your memory foam feels like pavement — squishing your tender body and making it scream all the louder, a cacophony of miserable symptoms that you just have to lie there and bear. For hours. Every. Single. Night.
Imagine getting through a day and night like that, and then having someone say to you, “Man, I’m jealous — I wish I could stay at home all day!”
Do you see how demoralizing that could be to someone? It’s a private fucking hell, it’s truly awful. Not that my whole life is awful, but more days than not are indeed this bad, and all too often that’s people’s attitude. It really wipes my resting niceface right off, and totally screws up my “fake it ’till you make it” coping strategy.
But how can you really know if someone’s sick if they don’t look it?
WITH THEIR WORDS, dummy. YOU LISTEN TO THEIR WORDS.
Trust the people in your life who tell you they’re not feeling well. Your reaction to someone else’s admittance of that, which often doesn’t happen until a breaking point — can have a HUGE impact on their life. Be the person that helps them find the right doctor. That googles their symptoms in-depth to help find answers. Or simply be the person that listens to what’s going on with them, instead of hurrying away uncomfortably or changing the subject.
We’re doing it all wrong when it comes to our attitudes about chronic illness, and it’s at the detriment of those of us already in a very precarious place. This is off-topic for the website, I know, but it’s really important to me — so I suppose my sharing here is fuckless.
Thanks for listening.
Carl Sagan’s musings rep’d in creative makeup.
My bookbaby, #HowILostAllMyFucks, is a 3-parter. This is from Part III’s Fuckless Adventures, “Make something beautiful.”
Carl Sagan once said, “We are a way for the universe to know itself. Some part of our being knows this is where we came from. We long to return. And we can, because the cosmos is also within us. We’re made of star stuff.”
The idea that creation is a way for the universe to know itself is a spiritual concept that I found both internally (meditation) then externally (philosophy class) almost twenty years ago.
It helps me find meaning when things seem just ridiculous, detachment at the unpredictable, and lightness amongst the heavy.
And he’s being literal about the starstuff.
The carbon, nitrogen, and oxygen atoms in our bods were created in stars that lived over 4.5 billion years ago. (And perhaps some evolving dinosaur bits in betwixt…)
This fun with creative makeup is a representation of that idea, using a leaf as the earth-thing. I’m going to get a pro to design a similar tattoo; though not across my face, haha, not quite that fuckless.
It was a lovely time. I’m even more excited to get the tattoo, and amped to keep playing with my new hobby here.
I’m a spoonie and had been struggling physically and mentally to get decent work out of myself, but after playing with face paint and having some silly photo fun — most of an essay poured right out! Inspiration begetting more inspiration, gotta love that.
As for the rest of the book: Part I sets the fuckless scene in traditional reading form, and Part II is a 30-day meditation challenge.
Together they will have you setting yourself freeeeeee of all the bullshit you don’t want and don’t need.
I’m seeking a book deal for my bookbaby and very much appreciate follows and claps ❤
Happy Halloween/Samhain/All Soul’s Day!