A few years ago, everyone on the internet was all about #positivevibesonly, and I was fully on board. ⠀ ⠀ It was the first year of being full-time debilitatingly ill, and I doused myself in positivity, making myself feel better via “I’ll heal by xx date” hopes, then hope would proceed to kick my fucking ass, over, and over, and over. For. Years.⠀ ⠀ Trying to put roses on a shit sandwich results in losing touch with reality, setting ourselves up for disappointment.
And that’s when it’s our sandwich.⠀ ⠀ When we put roses on someone else’s shit sandwich, it can be far more damaging — setting expectations that aren’t possible, leaving the person in shit feeling even worse, because now they’re letting others down too. It leaves hurting people feeling further diminished.⠀ ⠀ And when it comes to chronic conditions, toxic positivity can be downright ableist. If someone shares their struggle with you, anything along the lines of, “It’s not that bad” isn’t helpful. At. All.⠀ ⠀ If you’d been stuck in rain for hours, feeling cold and miserable, and were likely to stay there for years — would you feel better if someone said, “At least it’s not a blizzard?”⠀ ⠀ Helpful positivity lifts up others, “You’ve come so far the last five years, and you’re working so hard. You’ve got lots of healing ahead, there’s no hurry, and I’ll be here.”⠀ ⠀ On the other hand, toxic positivity is like a band-aid that’s just the sticker — “It doesn’t seem that bad to me, I bet you’re fine.” It hurts the wound further, ripping off healing when it’s revealed to be a farce.⠀ ⠀ Looking for a silver lining is lovely. But never insist a highly-problematic cloud isn’t an issue. ⠀
Sometimes in order to become who we need to be, we actually *need* our lives to act like big asshoolios for a bit. Obnoxious as it may be, it’s this sort of being cracked open that often leads us to our inner treasures; our unique strengths, talents, quirks, and inspirations that could not have been mused up through the same ol’ same ol’.
So if life is presently pushing you towards a breaking point, I recommend that you lean into your emotions instead of avoiding them – the way out, is through. Have a meditation on the matter, a good cry, or beat the shit out of your bed.
Sooner or later, you’re going to break either way. We break because we need it, so the process cannot be stopped — only proloooonged.
You can do it with intention, knowing that the upset is happening for a reason, and you’re gonna fucking find it – or you’ll break when it finally catches up with you, usually by surprise, and never at a great time. (In my experience, the universe tends to get louder when it repeats itself…)
Nothing, inherently. It’s nice to want to get along and it’s normal to prefer being adored over disliked, of course.
The problem is when you start giving fucks in order to get someone to like you: Agreeing when you actually don’t, censoring yourself beyond politeness, doing things you’d really rather not, allowing attitudes towards you that are less than respectful, and all kinds of other ways we diminish ourselves when we make our objective: be liked.
Because when that’s your MO, there’s no choice than to be less of yourself. Giving fucks makes a dull wash out of the glory that you are; the you when you’re behaving with more inner-direction, when you’re really being yourself.
This realization terrified me when I first had it. I thought of myself as being a good friend, well-liked, caring, friendly, fun – I was only considering myself in relation to others. This led to trouble when I was alone. Over analyzing my relationships. Overconsidering others’ perspectives on things like my art, or even what kind of music I was listening to, i.e. “I’d be so embarrassed if so-in-so knew how much I love this.”
It was like I was never alone, not really, despite larger-than-normal amounts of time spent alone. Who was I even living my life for?
It was such an important realization: My life should be about me.
It was like I was spending all of my energy on being the best co-star in everyone else’s movie. Not that I didn’t pursue my own passions and whatnot – but “they” (those I’d prefer like me) were intrinsically involved in my decisions, even ones that had nothing to do with them. It was just little blips of thought that seemed like nothing, but as a mindfulness-obsessed sort, I quickly realized that they added up to living on the periphery of my own life.
Watch your mind and see if you do this. (You almost def do, society trains us to.) And try to drop it. This will help loads in the next step: staying inner-directed when you’re with others. This involves fighting the urge to blend in and saying what you really, truly, think of matters and opinions that arise. (Don’t be a dick or anything… Or maybe do, I don’t know what’s best for you. 🤷♀️)
Start paying attention to your feels when you’re around others, and right afterward. It’s important to feel good.
I feel like that’s almost a controversial thing to say, I can hear the cries of, “but selfish!” It’s not selfish to ensure your well-being, not at all. In fact, making sure you’re feeling centered is responsible. Being where you want to be and doing the things you want to do is responsible. The world needs you at your best! Your people need you at your best!
You’ll probably find that even when you’re acting from a truly inner-directed place you’re still a positive force in others’ lives. Perhaps not in the same ways. And perhaps with a totally different flavor: martyrdom vs weeeeeeee.
And the funny thing is that when you get really good at this inner-direction thing, most folks will indeed like you. It’s nice to be around people who are at peace with who they are, comforting even. They lack neediness and emanate confidence. They offer unique perspectives and speak their truth.
But others will still totally think you suck. C’est la vie.
Looks can be deceiving…there’s so much people don’t know.
TW: Suicidal ideation.
What comes to mind when you think of an autistic person? The movie Rain Man? Someone who loves to talk about bugs? A child hitting his head against the wall during a raging meltdown?
You probably don’t picture someone like me; a 37-year-old female who’s been described using words like “perky,” who’s organized an extensive amount of fundraising efforts and events, who’s had some career success, someone who largely “seems normal.” So, when someone like that, someone like me, winds up being diagnosed with Level 2 autism; there are some who are dubious, especially those unaware of autism updates in the Diagnostic and Statistical Manual of Mental Disorders, which redefined the already-misunderstood syndrome.
These doubtful folks also cannot see the things undiagnosed autistic adults go through, the times I quite resemble that raging child (but worse, tbh), and the circumstances that build up to it. And they don’t know the chaos it causes, how it can lead to loss of income, shelter, and relationships:
They don’t know that in addition to being a way to control my social environment, planning fundraising events were my specialinterest; something I engaged in therapeutically, but compulsively. They don’t know that even a decade post-planning, the idea of running a charity event’s silent auction still makes my hands sweat because names and numbers are like Teflon to my brain. They don’t know having problems with executive function isn’t the same thing as “being ditzy,” and they don’t know it isn’t the same thing as not paying attention, either. (I care, far far too much.) They don’t know that I felt like an outsider at my own events, or that I’d get extremely drunk afterwards because my body was vibrating wrong and my mind wouldn’t stop obsessing over each interaction.
They don’t know that while the motivations for my efforts were pure of heart, my enjoyment was largely a façade — one indicative of how I’ve approached life in general, trying to hide the weird complicated iceberg of who I am by showing just the teensy lil’ sparkling bit. They also don’t know that this method, pretending to “be normal” all the time, started exploding, to my (often extreme) harm, as soon as I put on that mask.
And they don’t know the price of “seeming normal.” They don’t know about the eating disorders, or about the night I was sent to the mental ward for my safety at 19, the night the list of suicide “warning signs” started looking like a list of announcements. They don’t know that I had my first mental break later that year, 2002; at one point going out dressed weirdly and finally behaving however I wanted, feeling free as a bird, as if my mind had been repressed its entire life and finally demanded a break from the pressure. And they don’t know about the other mental hospital stays, where I kept posting to make sure people knew I was going to be okay, even as I planned and wished for life to cease with every fiber of my being — feeling that since I’d tried everything and was still failing, death was simply the most logical solution.
They don’t know I’ve lived in seven different cities since high school, desperate for somewhere that felt safe to be the whole me. They don’t know how many times I’ve tried to live abroad, hoping I’d be perceived as less “off” if I were a foreigner. They don’t know about all of the work problems I’ve had; all the whispering, the cocked heads, the strange comments, the constant confusion and misunderstandings. They don’t know that fluorescent lights make it hard for me to think, as does hearing others’ conversations; or that air conditioning can truly send me over the edge, just like uncomfortable shoes. And they don’t know that my brain can have a much harder time cooperating if I have an aversion to the task at hand, that building pressure while doing it makes me feel like I’m going to explode. They don’t know that getting energetically overwhelmed to the point of neural malfunction doesn’t mean someone is lazy.
They don’t know my thoughts often happen all at once, examining an idea from all over, reviewing what I know and have experienced, then finally puzzling it together; which makes it difficult to verbalize a prompt reply, especially since it doesn’t really happen in language but in…impressions? I am constantly struggling to make my actual point understood, failing, and giving up. I’m not just misunderstood in a “they don’t get me” way — I, like other autistics, am consistently, miserably, misinterpreted.
They also don’t know that this is made worse by a coping method I’ve employed when no thoughts feel safe to say: asking questions. They don’t know that I’ve probably made many past friends simply because I often subconsciously, but continually, encourage people to talk; which they like at first, but that it doesn’t tend to work out well for me in the end. (It’s hard to be seen when you hide.) And they don’t know that when I listen for too long it makes my core quake and my strength deplete like I might fall out of my body, even when I’m authentically enjoying the connection. Which I very often am, my curiosity is wonderfully palpable — but after a certain point, my brain gets overwhelmed and kuputs, this is not a choice.
They don’t know that seeming “normal” requires filtering my natural expression to the point of feeling like a robot, that my smile and positivity may be for their comfort; so I don’t overwhelm them with the intensity of what’s actually happening inside me, so they don’t take it personally. Other times, I’m afraid I’ll be rejected if I don’t “shine.” (Or, reasons I’m not even consciously privy to; the defensive mind is one complicated beast.)
They don’t know that sometimes I “seem so chill” because, like many auties, it can take days to figure out how I actually feel about an event; that offenses I brush off in the moment can later lead to a perilous state. And since the frustrated energy behind it has been building up for decades, it’s too combustible to be received by the source — so that pent-up energy has nowhere to go, even therapists haven’t seemed to want to deal with it. So, the pressure keeps building. And building.
They don’t know how hard it is to function when I feel like that, especially since the motions my body asks to release the pressure with (called stims), are considered “too weird,” a sight likely to leave one perceived as unemployable. They don’t know that’s why I used to growl loudly all the time, a behavior I’m not sure how I got away with for so long. They don’t know that suppressing it is when the self-harm started, using my long nails to tear into my skin during a meltdown; causing a quick, but bizarrely soothing, rush of calm.
They don’t know the shame that pours over me when I’ve accidentally touched the broken skin, reminding me of my weakness, and of how self-destructive I can be. They don’t know about the much darker times; the plans I’ve made to leave this world, how close it’s come, nor how many times. And they don’t know that even though it keeps trying to kill me, I authentically love life, so these experiences are like being taken over by a dark and terrifying stranger.
Beyond that, they don’t know my mother chose her death, so it’s also a minefield of childhood trauma.
Coming out #ActuallyAutistic
They don’t know that since my late-May autism revelation, I’ve spent most nights awake with traumatic memories crashing into me; all the experiences that resulted in chipping away at my identity in shameful chunks, eventually leaving just tits and a smile. They don’t know how I clamored with coming out at all, how I debated if advocating for myself was worth the seeming likelihood of being societally dubbed “undateable.”
They don’t know how it felt to finally figure out why I am the way I am, to feel like I finally have clarity, some hope — after all the moves, the mental wards, the homelessness, the loneliness — just to have acquaintances decide that they know more than the professional who spent hours diagnosing me. (It must be noted that due to lack of access to professionals with up-to-date knowledge/experience diagnosing adults, resorting to self-diagnosis is a regularity in the community.)
They don’t know how horrifying it was to realize that there are people who won’t believe my diagnosis simply because of “how I seem” to them; without knowing me, without even bothering to ask one single question. They don’t know their not understanding actually makes autistic situations much worse — with some even asserting their ignorance somehow means we shouldn’t be in need of societal support. And, worse than apathy, they don’t know how terrifying it is to discover that there are people who are actively against people like me finding answers (please read).
They don’t know that after years of struggling to find an income I can actually perform, it was lost to the pandemic — or that Unemployment Insurance is months late paying, and just isn’t responding. They don’t know I haven’t been able to make rent since June and literally cannot, will not, survive being homeless again. They don’t know that this is probably a pretty “normal” state of affairs for autistic adults right now; that we’re already 2.5 times more likely to die early, and when things are dicey for society at large…they’re always more dangerous for those already vulnerable.
And they don’t know how it felt when, while dealing with all of that; a stranger shared my coming-out post, lied about a lack of professional diagnosis, then publicly proclaimed me a fake during perhaps the most vulnerable time of my life. They don’t know that a few days after that public bullying, bolstered by private interactions, I went into my second mental break — this time much more intense, and for much longer. I was on my own and cannot remember much of it, but it started after an especially heartbreaking denial of emotional support, when it felt like there were literal explosions going off in my brain; then my body started violently convulsing, which happened sporadically throughout the break. (Yes, I’m trying to see a neurologist.)
They don’t know I thought I was wandering through an afterlife, rather than through LA-county cities full of very alive, potentially dangerous, strangers (whom I was not at all shy about interacting with). The coming days brought a run-in with police, a night in the hospital, and hundreds of borrowed dollars in impound fees — but I know the grim truth is that I’m lucky not to be imprisoned, or worse.
They don’t know that the little girl who was called cruel names due to oddities (like preferring to wear only purple dresses, how horrifying) — did not stop her wide array of natural expressions so easily, not even if she made it easy on the adults in her world. That if a child acts “nice” in front of you, but then “destroys her bedroom every night, except for the time we hid a video camera in her room,” it’s more than a fucking anecdote.
Somehow, they don’t seem to know that kids grow up, and that adulthood lasts a very very long time.
People who share their autism stories online aren’t trying to prove their autism to the oddly skeptical; we are communicating with people who are like us, trying to provide and receive tools while creating community for those of us who feel like we aren’t made for this world, human beings who desperately need ways to survive within it.
So, to those weirdly suspicious of the neurodiversity community — inadvertently or not, your attitudes are helping to kill people like me. Please, for the love of all that is good, quit making it about you. Please, please, just let us be.
So, 3 years after diagnosis, I’ve figured out how to nearly squash the fibromyalgia pain that’s plagued me for close to a decade – Wim Hof and the endocannabinoid system are fabulous, as is eating/drinking intensely healthy, and exercising through the pain takes years and can truly drive a person over the edge but does indeed help wonderfully, hooray!!
But the fatigue is still there. (Esp annoying because w/pain you can just pretend like it’s not happening until you burst, but fatigue…you just can’t. effing. GO.)
Long story short, the fatigue seems to be getting a lot of help from another diagnosis; one that I’ve just received. It also explains jillions of things throughout my issues-filled life, which is a common description for independent adults with this dx. It explains why I’m capable of doing things like interviewing scientists; but will get flustered if you list stuff and expect me to remember it, struggle with regulating my emotion, and have trouble with executive function tasks. (People like me often get asked mean questions like, “how are you smart, but also so stupid?”)
It sheds light on random things like why people often misread my intentions and emotions, why I have no verbal filter, prefer to talk frankly/bluntly about things, am very interested in “boring” details, why I zone out at sparkling things/rock when I sit/spin around my apartment/otherwise ‘stim,’ why my JTT crush was so next level, why learning to drive was like explosions in my brain, why I totally lose my shit when plans change at the last minute, and even why I strongly prefer to wear the same style of shoe, daily, for years.
Today, after hours of assessments, I was officially diagnosed by a mental health professional as being on the autism spectrum.
I am autistic. Weird.
An online test given to me by an autism organization confirmed it 6 weeks ago, and talking to people with brains like mine has been eerie, like having my completely weird, largely hidden, experiences described by people I’ve never met. It kind of makes me feel less original, I thought I was so unique, haha, nope, many of my seeming eccentricities are completely normal for an autistic person – but it’s very very comforting.
Though it’s definitely been a lot to process and an intensely emotional time; knowing the whys and having tools and community is helping already, I am definitely grateful for this news.
Autism in females is estimated to be much much higher; until recently, psychologists were trained in traits that traditionally present in males, but not for typical female experiences (patriarchy, psssch), which involve a lot more masking of autist traits (vids below, any gender can have these ‘secondary’ traits/verbiage is in flux). I’ve been referring to this masking behavior as “people-pleasing” or, here “giving fucks,” as I worked on stopping it over the last decade…thereby accidentally unmasking my autism.
We use this nonsense word to describe the expected, whatever we’re used to seeing in life. This completely denies the fact that we’re a wildly diverse bunch – a melting pot of different cultures and ways of living. We are not the same.
How this pandemic affects someone who’s already dealing with serious chronic illness, and its cacophony of physical/financial woes, is different than an able-bodied person. Being high-risk means fearing for your safety every time you leave the house, it means a sneeze could destroy or steal your life.
And 4 in 10 adults (37.6%) are high-risk… IT IS NOT NORMAL TO BE LOW-RISK IN THIS PANDEMIC.
The attitudes of our police forces do not affect BIPoC communities the same way they affect a white person. I was raised to believe that it’s normal for cops to keep you safe, while others have to learn how to stay safe *from* the police.
And ~40% of our nation is of color… IT IS NOT NORMAL TO BE WHITE.
Normal is a silo. It isolates us from those that are different from us, making it seem like they aren’t truly there. It keeps us thinking the rest of the nation lives and thinks like our Facebook stream – it blinds people from understanding, keeps us from seeing the comprehensive picture.
Valuing “normal” leads to concepts like groupthink, where people just follow the crowd, letting society take them wherever it wishes. It denies that our entire history is riddled with abuse and oppression, disregarding the affected humans as “other.” It shifts the responsibility from the individual, it makes people feel like they aren’t culpable for the things that happen around them; because as long as it’s normal, it’s fine. (Let’s reflect on this point in relation to our history for a moment…)
Normal is how so little has changed since our civil rights movements, 50 freakin’ years ago; and we’re not treating our elderly and disabled folks any better either. Looking to normal for guidance will lead to assumptions around battles we don’t know anything about. We hurt people by propping up normal.
Is current American culture *really* reflecting our hearts and souls?
In good moments, I see people coming together to rise up for what matters, folks advocating both for those who are different than them, and for themselves. I see able bodies who are happy to endure a little discomfort for the safety of those more vulnerable to COVID. And I see the beauty of the human spirit, so willing to fight, support, and serve — and so often with such powerfully beautiful creativity.
But then there’s the rest. Those who think people like me (#spoonie) should just stay home, forever, because they can’t be bothered to wear a piece of fucking fabric on their faces like the rest of the now-recovering world, and the rest of the fucking history of pandemics.
I see people who just don’t care that others (including seniors!) have been working for minimum wage in the front lines, now ready to throw in our teachers; people who whine about being bored and inconvenienced — begging for things to “go back to normal” when the norm is fucking hell for so many.
I do my best to stay positive, but I’m one of them. It’s not okay to be a poor person in our country — is that what resides in our hearts and souls? Do I not count because I haven’t been able to get my body and brain to work in an employable fashion? Because there’s no test for what’s wrong, should I just be grateful that decades of paying disability taxes covered a teensy bit of the time I’ve been desperately trying to survive? If I can’t keep figuring it out, do I deserve to perish? Is that what resides in our hearts and souls?
And are we the kind of people who don’t trust communities reporting mistreatment, even though the stats clearly reflect it (always have), and more shocking video footage of it comes out allllll the time? The kind that still fucking manage to say “is it REALLY all that prevalent though? Things seem fine from my suburb. I just don’t see it.”
I love this quote. After going through a difficult time, any semi-reflective person is likely to do some thinking on their weaknesses and faults; because how else does one avoid making the same mistakes?
But it’s easy to overdo ‘er. It’s common to not only own one’s errs, but to define ourselves by them, if only unconsciously. When you decide that you’ll never be good enough, things improving seems impossible. And the mental place of “why bother?” is no breeding ground for resilience.
Compassion for ourselves helps us get to a place of seeing ourselves as stronger and wiser for our mistakes, which makes trying again seem worth the effort and potential risks.
And compassion for others is how we become able to look at the world, and the people in it, as potentially trustworthy. This enables us to put ourselves “out there” again, one of many daunting-but-essential parts of getting to a place of resilience.
Becoming resilient is generally a prize that must be hard won, but the goods are mighty good indeed.
An editor had me switch formats so the following poem will not be published anywheres. But, I couldn’t just delete it! It’s a love letter to cannabis, inspired by my transition to needing it medicinally. I think my fellow herb lovers will get it… So, here:
I know my love’s grown temperamental since our relationship has taken on this medicinal tone, and I’m so sorry. Now I lean on you like Snoop taught me, and that’s everyday. I’ve started to look to your faults, pointing out where you make me lose track of thoughts—and overlooking how you make my imagination ace, helping to form a thought worth capturing in the first place.
I take you for granted, it’s not enough that you melt the pain in my aching body; I just want you to rid me of more, and I want you to keep it away forever. You distract my mind from pain via whimsical and varied trains of thought, but I get frustrated when the same locomotives hamper my ability to express them.
I love how you give even boring food pizzaz, but bellyache that you’re to blame when I munch too much. You ease my worried mind, you coax anxiety out the door—and yet still, I ask for more.
I judge you by your appearance, and even take a sniff to see if you’re up to par. I reserve photos for when you look your best, sharing only your gorgeous purple tones and crystals; and resort to name-calling when your game is off—I call you schwag that smells of hay, and you don’t deserve that, not even on your worst day.
But, my dear marijuana; my pakalolo, my herb, my sensi—the truth is that I love you, that you truly are a kind bud indeed. Since our last vote you’re always there when I need you. (Though, I’ll admit, the price increase totally blew.) Whether we meet via vape pen or pipe, or by rip or a toke, if you grew up indoors or out; you’re always someone on whom I can count.
So I vow to appreciate you, my beloved ganja, to see you for all of your goodness; and there is so much to see—for you even make smelling skunky a good thing! I love you so much, I’d even declare it with a ring.
In the summer of 2015, I went a workshop for entrepreneurs in hopes of starting my still-someday-goal of owning a community-oriented cafe. Here’s the article they wrote about it, and the video they created: