Welcome to Halcyon Tidings, a bi-weekly dose of real but uplifting takes on life, getting through it, and trying to be the best humans we can be. (Also much randomness.)
Right now I’m thinking a lot about security in life, on a personal level, but also wondering how many of us actually feel secure in our lives. I had a delightfully quirky therapist who once responded to similar wonderings of mine by sharing, “I feel completely and totally secure,” with the most contented and safe vibe I’ve ever felt. It was the first time I’d ever heard anyone say something like that, and I believed her. She’d also shared enough for me to guess she wasn’t well-off—perhaps irrelevant as wealthy people often seem to be the most anxious in that regard—and she must’ve been in her mid-70’s, still working. But she radiated security from her core, and glowed for it.
That glow, and our personable visits, got me through a very scary, painfully insecure (and lonely) time. It helped me believe that I could cultivate that feeling of safety within myself as well, rather than relying on the mad rollercoaster of life to find such stillness.
I honestly haven’t been able to do it yet, not really. For short periods I have, even during scary times (I’m disabled and have been going through the SSDI process for close to a decade); but the “what if’s?!” and fearful tears still occupy far, far, too much of my emotional space. I’m 40 now (heyyy middle age 💃), so I suppose she had 30+ years on me. Hopefully I’ll grow into someone with such authentic peace in the face of life’s infinite challenges and unknowns.
For now I’m just trying to focus on active surrender—doing all I can do, then trying my best to let go and actually recharge in my downtime, finding a feeling of security by soaking up appreciation for whatever the moment is offering instead of letting my mind spin out in exhausting futility. (Appreciation Ex., As I draft this, the blanket by my face is so so soft, and same for the warm doggo curled up at my knees, gotta love the coze.)
I hope this month has treated you well, and all of 2023 for that matter. (Collectively, I feel like we’re very very due for a good year!) And thanks for reading.
* SUBJECT/TITLE QUOTE: “Super perfundo on the early eve of your day” is from 2001’s Waking Life, a film about consciousness, life, philosophy, everything (and nothing) all at once. *
For two decades, a Massachusetts school has been under fire for torturing disabled students with shock devices. Now, activist efforts to end the practice may soon pay off.
In the mid-90s, around the age of eleven, I saw a television show on PBS about old asylums that would do horrifying things to people society deemed insane. It scared me, especially since it didn’t clarify what happened to those same people in modern times.
I asked my mother, who took some time before she answered. While waiting for her response, my mind raced with early memories I tried to suppress: frequent teasing, adults concerned about how I didn’t “act normal” and had atypicality in developmental milestones.
“Well, there’s definitely still improvements to make,” my mom finally said, “but those awful torture-like treatments don’t happen to people with mental health issues anymore.”
While she was right about most things, she was sadly wrong about this.
To this day, there are Americans being subjected to a treatment that the United Nations Special Rapporteur on Torture has officially condemned as torture at the Judge Rotenberg Center (JRC), a residential school for students with disabilities in Canton, Massachusetts.
Patients at the facility with “developmental disabilities, emotional disorders, and autistic-like behaviors” are being shocked using an extreme form of aversive therapy. This procedure sends strong electric shocks throughout an individual’s body with a device called a graduated electronic decelerator (GED). It is often used when patients exhibit unwanted behavior — which, according to those who have undergone the treatment — pretty much means not acting “normal,” a standard that the center defines loosely.
In fact, the movement against JRC, known online as #StopTheShock, gained traction in 2012, when partial footage of a Black autistic teenager named Andre McCollins being shocked thirty-one times in seven hours was made public. McCollins was allegedly forced to undergo the treatment for refusing to take off his jacket, while all but two of the shocks were for “tensing up” or “screaming.” JRC claims to only use GEDs in extreme cases, but, again, that deeply conflicts with the experiences reported by many people who have had to stay there.
Additionally, the only defense that JRC offers is claiming the GED is necessary to prevent self-injurious behavior (SIB) as well as aggression (AG) and saying that they have the most difficult cases in that regard. But the FDA strongly disagrees. The FDA’s 2020 inspection reported, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs [electric stimulation devices] are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.” JRC doesn’t need to be shocking these already-struggling people, it’s just not necessary.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4 — a type of electric stimulation device that is not approved by the Food and Drug Administration — shocks patients at 90 mA, which is nine times higher than a cattle prod and around twenty-two times stronger than an electric fence.
The fight to end the torture happening at Judge Rotenberg has been going on for nearly two decades, but JRC’s influence and funding has been an obstacle. In 2020, they received $84,108,326 in grants and other government funding. That same year, the FDA attempted to ban ESDs at large, stating the agency “has determined that these devices present an unreasonable and substantial risk of illness or injury,” which could include “depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness.”
But JRC reacted by suing the FDA, and in July of 2021 the ban was overturned by the U.S. Court of Appeals for the D.C. Circuit, stating, “a use-specific” ban “interferes with a practitioner’s authority by restricting the available range of devices through regulatory action.”
But, due to the efforts of community activists, most vocally the Autistic Self Advocacy Network (ASAN), that may soon change — the recently passed omnibus bill includes a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification. Now the agency just needs to know that the public is against this torture and in support of the #StopTheShock movement.
We’d like to think that we’ve moved on from the days of treating people who can’t squeeze into a homogenized idea of “normal” as less than human, but in fartoomany cases, we really haven’t. As a neurodivergent person who’s had public autistic meltdowns — something that can get you put in places like JRC — this is a terrifying example. So, please, for the sake of the millions of neurodivergent people in this country, and especially those at JRC right now, please bust out that phone and start putting pressure on the FDA.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
Jennifer Msumba/Wikimedia — A drawing by a former resident of the Judge Rotenberg Educational Center depicting the punishment of GED shocks while restrained to a four-point board. According to the artist, residents sometimes received multiple GED shocks while restrained to a four-point board as punishments for standard infractions.
Ahhh, the empathy miss — that crucial moment when someone’s having a hard time and you really want to say the right thing, but after you speak there’s just a painfully awkward pause…you’ve stepped in it, and made things worse.
Or the reverse, you’re having a hell of a time and express that fact, and someone says something with the best of intentions — but rather than comfort their words leave you feeling invalidated, misunderstood, and worse than before you reached out.
As a society, we really aren’t great at holding emotional space for one another.
Luckily, a sociology researcher and famed storyteller named Brené Brown has been researching topics in this arena for well over a decade.
She’s covered many relevant ideas in this area, but one of the most helpful is probably her list of empathy misses from the book Dare to Lead.
BrenéBrown and Empathy
These are common well-intentioned behaviors displayed in emotional times of need that completely miss the mark, leaving the already upset person feeling more so.
While I’ve certainly been on the side of empathy miss, as everyone has, I’ve also dealt with being on the diminished end recurrently since invisible illness and problematic Autism traits have taken over my life.
People genuinely seem to want to say things to make me feel better, but they’ll wind up invalidating my experience or changing the topic altogether; leaving me feeling not only still alone with the issue, but also feeling like I’ve erred by even bringing it up.
And these are mostly kind, truly well-intentioned, people; and this happens to all kinds of Neurodiverse and/or disabled people.
They are trying — we all are trying — but we lack tools. This stuff just wasn’t included in our social conditioning. (And in some cases, there were toxins in its place.)Brené Brown’s 6 Empathy Misses
The concept of empathy is often described as a quality that people simply possess, or not, but while some folks do seem to have a particular knack for effectively understanding others’ feelings — Brown says empathy is also something we can work to become more effective at.
When dealing with nebulous and subjective issues, it’s often best to look at the failed attempts — or, what not to do. In this spirit, I’d like to present the 6 Empathy Misses identified by this sociologist who’s dedicated her life to helping us live with more heart.
This work branched out from her interest in human shame, with these being common unhelpful reactions after someone’s divulged an err. The list is from Dare to Lead, with explanation text from the book’s study guide, followed by my brief take:
Empathy Miss #1: Sympathy vs. Empathy
The friend who responds with sympathy (“I feel so sorry for you”) rather than empathy (“I get it, I feel with you”)
When faced with an immediate internal reaction of “sucks to be you,” the most caring words are often something like, “That sounds really hard, need to vent?”
Empathy Miss #2: The Gasp and Awe
The friend who hears your story and feels shame on your behalf.
Have you ever confided in someone, sharing a mistake you’re processing — and instead of empathizing, as you might expect a friend to do, they act horrified and judgy?
Yeah, everyone else too. Let’s start trying to remember our own f*ck-ups before condemning those who trust us with their struggles.
Empathy Miss #3:The Mighty Fall
The friend who sees you as perfect. They are so let down by your imperfections and disappointed in you (“I just never expected that from you. I didn’t think you would ever be someone who didn’t do well. What happened?”)
The thing about pedestals is that they’re really easy to fall off of — plus, you know, they’re complete and utter bullshit. No one is perfect. That’s not even a thing. When we expect people to be better than human, we lose our humanity.
Empathy Miss #4: The Block and Tackle
The friend who is so uncomfortable with vulnerability that they criticize you (“What happened?! What were you thinking?”)
Otherwise known as, “How to get people to never trust you again,” this deflective move helps those scared of feels to avoid their own self-reflection — and it’s really freakin’ common. We live in a really judgy society and that kind of persistent energy can lead to folks becoming really defensive, which often turns into lashing out with condemnation.
I’ve (slowly) learned that compassion is the way out of judgment. When I’m hurt and my mind gets hardened over the WTF-ness of someone’s behavior, I do my best to imagine there’s a reason I’m not aware of before doing anything about it. It’s hard, but it’s important to remember that perspective really is everything.
Empathy Miss #5: The Boots and Shovel
The friend who is all about making it better and, out of their own discomfort, refuses to acknowledge that you can actually make terrible choices (“You’re exaggerating. It wasn’t that bad. You rock. You’re perfect. Everyone loves you”). They are trying so hard to make you feel better that they’re unable to connect with your emotions.
This is another popular one. When feeling shame, and wanting to talk about the mistake — something that can lead to not making the err again, as the mind’s verbally articulated why it’s a nope — but someone just won’t believe you, it’s invalidating at best; and, at worse, it enables problematic behaviors.
Empathy Miss #6: If You Think That’s Bad…
The friend who confuses “connection” with the opportunity to one-up you. (“That’s nothing. Listen to what happened to me one time!”)
This one’s another one that often happens with truly good intentions, wanting to help the other person see that things could be worse; but it’s actually invalidating, and leaves the hurting person still alone in the issue they were hoping to talk to someone about.
Empathy Miss #7: I Can Fix That!
The friend who immediately jumps to problem-solving rather than just being with you in your experience.
Most of us struggle with this one, especially if friends often come to us for help solving problems. One helpful empathic reply is to acknowledge the feelings and ask, “What does support look like?” This gives the person in struggle the opportunity to say, “Just listening helps” or “Can you help me figure this out?”
You don’t need to fix it or make people feel better. Connecting and listening is powerful.
Try to understand how the person is feeling (not how you might feel in the same situation).
Help people know that they are not alone in their feelings. Even if you’ve never had that experience, you might know the feeling.
Let people know that you are grateful they shared with you.
Allowing opportunities for second chances. When we miss the opportunity to show empathy or when we would like the opportunity to do it better, we can say, “I’d like to circle back.” In this context, circling back means practicing empathy by trying again.
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:
“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.
“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.
“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.
“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.
“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
“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.
“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.
“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.
“That everyone is different. I really wish that was emphasized more. There is no ‘stereotype’, everyone still has their own personality.” S.G.
“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.
Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:
They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.
Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.
It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.
But the thing is, I don’t live in a society that’s allowed me to do so.
The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.
There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.
And don’t even think of wearing headphones. Those are anti-social.
But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.* * These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.
Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.
The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.
Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.
But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.
The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.
I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.
I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.
In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.
But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.
I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.
Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.
I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.
It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.
In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.
Since then, not so much.
I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?
And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.
The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”
Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.
Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.
Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.
I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.
And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.
I’m broken, really broken. But I don’t wish to shatter.
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.
It might seem like you’re just sitting there, but you’re learning to steer your mind.
Meditation is simply the shit. It may seem like just sitting there trying not to think; but it’s really a process of centering in oneself, learning to better manage our mental space, and finding our best selves.
It’ll start working quickly too, even if you find that you can’t get a moment of mental silence during the beginning. This is because awareness of what is happening in your mind. If you’re a fellow flawed human, you’ve probably heard yourself say, “I’m sorry, I don’t know why I did it, it just happened!” (Not. Fun.)
Mindfulness helps get rid of that sort of banal unpleasantness by properly introducing us to our minds, thereby meeting our motivations. And when we start to see the why’s behind our did’s — they change.
And then there’s the recognizing of harmful thought patterns: seeing the negative self-talk, all the replaying shite memories, the limiting beliefs, and all the other ways we let our minds bully us.
Meditation and mindfulness help create a detachment from all that unpleasantness, which helps it to lose momentum, allowing us space to choose to work towards creating a more nourishing mindset.
Our society seems to think we’re a mere collection of our past thoughts, that they define us — but our minds are our tools, they are not who we are.
“We think, therefore we are,” sure sure sure.
But we can also think about thinking and change it, working to ban harmful conditioning and replace it with awesome; therefore we are also more than our minds.
Our minds are just tools.
And meditation helps empower us to use them better, to gain control — so a tool isn’t always calling the shots. (We get enough of that in politics, yes?)
It’s super easy to get started too.
Here’s a quick how-to:
Get in a comfy position. You don’t need to pretzel it up, know lying down can lead to sleeping, but other than that, just be comfortable in your body.
Focus on your breath. Feel the air moving through your nose, filling your lungs, and effortlessly flowing out.
Don’t engage with your thoughts. As Mooji says, “Let every thought come and hug you, but you don’t hug anything.” Don’t judge it, try to not mentally react, just note it and return to your breath.
Repeat, repeat, repeat! It’ll get easier with time, really it will. Eventually, you’ll start enjoying the peace of clear mind, which is addicting once you know it.
Anywhere. In my cubicle days, I used to depend on bathroom stall meditations to find my center and get through the day — you can truly meditate an-y-where. Try it on a walk, focusing on the sensations in your body as it moves.
Anytime. Well, you can’t meditate while having a conversation, not a decent one anyways — but you can rock the mindful 24/7, simply by keeping an eye on your mind. Keep a detached, yet discerning, perspective; giving energy to inspired thought patterns, and ignoring the others, which will get them to peter out.
Meg Hartley for Leafly Published on June 14, 2019 • Last updated September 24, 2020
If you’re someone who has a strong affinity for the cannabis plant, you’re likely familiar with being judged for it.
But when you need it medically, this judgement can cause more harm than an awkward moment. When people make negative assumptions about what life is like for someone who medicates daily with cannabis, it can lead to things like job and home instability.
If someone, say, thinks that your chronic illness is actually a result of wanting to get high all day and be lazy—which it can look like, since illnesses demand rest—you aren’t likely to get the support that these illnesses demand.
“My ex-husband sued me for custody of our son, citing my medical marijuana patient status as a reason that I should lose him.”
And when you’re someone in this situation who’s also a parent—well, that’s a whole different level of inappropriate punishment due to a plant.
Jessie Gill, Registered Nurse and founder of Marijuana Mommy is someone who’s had all too much experience in this realm. As a public cannabis advocate and parent, she’s unfortunately dealt with a whole lot more than dirty looks.
“My ex-husband sued me for custody of our son, citing my medical marijuana patient status as a reason that I should lose him,” she says. “Fortunately, I’m in New Jersey where patients have more protection than other regions, but my son has been the victim of many cruel comments about me because of my medication.”
Perception around cannabis is quickly evolving. Yet even in legalized areas, parents often aren’t included in the changing perceptions of cannabis. The prevailing presumption often seems to be: If you’re using cannabis when a child is awake and under your care, then you’re putting the little one in harm’s way. But your medical condition doesn’t care what your kiddo is up to. You will have to combine cannabis and parenting. It’s inevitable.
The thing that people don’t seem to realize is that having a chronic condition can severely and negatively impact one’s ability to parent, and pharmaceutical medications often come with side effects that exacerbate this problem. In many cases of chronic illness sufferers, cannabis is the option that yields the best ability to parent.
For Many Parents, It’s Really the Best Option
Jessie suffers from a spinal injury and nerve damage in her neck, head, throat, and right arm. It causes mobility issues and constant pain, to the point that even holding her head up is excruciating. If she doesn’t medicate with cannabis, she’s completely debilitated and on bed rest. It was hard for her to go anywhere or do anything—even just watching her kids’ activities was too much.
Before cannabis, she had to medicate with opiates, Valium, Lyrica, as well as several other meds—a combination she says resulted in destructive consequences. Between the depression, fatigue, and stomach issues, she was barely even existing at all. She felt hopeless.
She’s grateful that cannabis relieves her pain, allowing her to fully engage with life again. She says, “Thanks to cannabis, I’m able to be present for my children. I can engage in their activities and enjoy time with them again. I can go places. I can sit at the table and play board games.”
“My five-year-old daughter has ADHD, and cannabis allows me to be more intuitive and compassionate while parenting difficult situations.”
Another mother familiar with this situation is Stefanie Taylor, who agrees that cannabis makes her a more present parent. She is a cannabis advocate who suffers from anxiety and Mixed Connective Tissue Disease, the latter of which results in widespread muscle pain and fatigue. Sitting or standing for an extended period is very painful, which can make the physical demands of parenting feel impossible, especially on top of her full-time corporate job.
Before cannabis, she was taking a monthly infusion of a biologically modified immunosuppressant, which made her weak and tired. But with cannabis, she’s able to handle the physical demands of parenting, adding, “I also feel that while I’m using cannabis, I’m a more patient parent. My five-year-old daughter has ADHD and I think cannabis allows me to be more intuitive and compassionate while parenting difficult situations.”
To Hide or Not to Hide
Both mothers are advocates of cannabis who generally don’t hide their use from others.
Stefanie says she feels frustrated that cannabis still has a negative social stigma, adding, “I also feel motivated to be an example of how cannabis can be used while parenting in a responsible and effective way.”
With Jessie’s position as a nurse, she says, “I feel a deep ethical obligation to share my story and to share information about the benefits with other potential patients—so I don’t feel like hiding it is an option.”
Conversely, there are many who feel that hiding their cannabis use is the only option. Kevin from Chicago says that sharing his medicating with others would leave him open for custody issues. His wife and trusted friends know, but he keeps it a secret from everyone else to avoid judgment as a parent or in other ways.
When asked if it’s safest to hide his use from other adults, he says, “Always. As much as I’d like to say otherwise, nobody should know. You never know when it can come back to bite you.”
Talking Cannabis With the Kids
Kevin includes his stepson in people he doesn’t tell about his medicating, being careful not to smell like cannabis around the 11-year-old. But Jessie and Stefanie’s kids are aware.
“Our children are our future. Teaching them the real benefits and the real risks of cannabis is how we change the stigma.”
Jessie says her kids were very different ages when she became a patient. “My daughter had just started college, and my son was in third grade,” she says. “My daughter was a little freaked out at first because of the stigma, but after watching me suffer so much, she was also hopeful for any solution. Seeing my remarkable medical results made us all realize how incredible this plant is. For my son, it was different. He hadn’t been exposed to the stigma yet. I knew I had to prepare him for the nonsense he’d hear in school and the hatred he’d encounter from others.”
Jessie also worried that if she didn’t tell her kids, they’d find her medicine and be afraid that she was doing something illegal. She adds, “It’s extremely important to educate our kids about cannabis at home, because they are not receiving accurate information at school. Our children are our future. Teaching them the real benefits and the real risks of cannabis is how we change the stigma.”
Stefanie’s daughter is only five, so she approaches the matter in a way that makes sense to her. “My daughter is aware that I use cannabis to help relieve chronic pain,” she says. “I talked to her about cannabis as a plant and how the flowers are the medicine. She knows not to touch someone else’s medicine (pharmaceuticals, too). I keep all of my cannabis products out of reach. I know there will be more mature conversations as she ages.”
She adds that her kiddo’s knowledge has caused an awkward moment or two, saying, “I’ve never asked my daughter to not discuss my health or medication with other people, although I considered it after she confided in a stranger at a restaurant!”
Clearing the Smoke on Stigma
These cannabis patients are working hard to keep their health in balance so they can care for their children. Stigma around cannabis use has real consequences, especially for patients—and even more so for patients who are also parents. The people in this article are responsible adults, hardworking parents who deserve to be treated with compassion, and, frankly, some common sense.
People who are unfamiliar with cannabis need to know that the reality is nothing like what it is on TV, and it’s also not like “that one time they did cannabis and it was totally crazy.” The experience stops being crazy pretty quickly, especially when you’re using it to medicate. If you have pain all over your body and then something takes that pain away, you’re able to think better, even if it is at a slightly different angle.
Also, have those who judge ever taken a strong painkiller? Do they think (and goodness, they must) patient parents ought to be taking Oxycontin all day? And let’s not even get started on the “wine mom” phenomenon. People have been medicating with cannabis since the beginning of history—it’s a valid medicine.
This sentence could be interpreted as a compliment, but the tone in which it’s delivered is rarely complimentary. It usually sounds more like an accusation, like we’re faking it or being wimpy. And I get it — we already look pretty normal (though likely unshowered and a bit dazed). Smiling, chatting about anything but our bodily agony — it’s confusing for people on the outside.
Faking health is a common coping mechanism for someone with chronic illness.
I’d like to shed some light on the motivation for this very misunderstood behavior.
1. We Can’t Talk About Our Illnesses All Damn Day.
If I answered “how are you?” with a list of all of the types of physical pain I’m in and other symptoms, I’d never get anything done. Being ill takes up enough of my life — hearing about your hot date or blabbing about finally getting into Six Feet Under is just more fun. Plus, distraction is good. Talking about illness can make someone more aware of their symptoms.
2. To Trick People Into Thinking We’re Competent.
Many of us start doing the whole “healthy person” bit to keep jobs and meet other responsibilities, especially social ones. If we reveal the gravity of what’s going on healthwise, it’s likely to result in others thinking that we can’t handle whatever is on our plate.
3. People Tend To See Us During “Good Hours.”
The pieces of time in a spoonie’s life where they’re rested enough to see other humans is truly time to be treasured. Those golden moments are precious and ought to be savored, which is likely to result in a smile, an expression can be misinterpreted as “nothing’s wrong.”
4. To Cheer Ourselves Up.
Like many, but certainly not all spoonies, I’m a smiler. I’ve always been a smiler, even when it hurts so badly I want to cry. Like many dealing with chronic illness, I consciously work on and for my happiness — and the result is often a smile. You just can’t let pain steal your happiness.
On really crummy days, my smile is 100% faux. I fake it because the world smiles (or scowls) back. And having people return miserable glances is unpleasant. The life of a spoonie can be very isolating, and a day with a few pleasant human interactions can help get one through a long and lonely night of painsomnia — trying to sleep through the pain and failing miserably.
So when you encounter someone with chronic illness and they “don’t look sick,” please just be happy for them! Take advantage of seeing this warrior while they are feeling themselves and not lost in a world of medical chicanery. Remember that seeing a positive expression on a spoonie means that they are strong and trying to get as much out of their day as they possibly can — despite fighting a battle a healthy person can’t even imagine.
Yesterday, I went to a doctor’s office that I hadn’t been to in months.
“How’s it going?” I asked the woman checking me in.
“I remember you!” She replied. “You were this nice last time as well. It’s so good to see you again!” She seemed genuinely relieved by something I had done, but all that happened was a normal greeting.
Strangers frequently overshare with me and then say, “I don’t know why I told you that!” I regularly get stopped in stores because people think I work there. I am trusted with the belongings of random people. All of my roommates wind up calling their pets “traitors” after I move in. Children tend to adore me, even when I’m annoyed at their presence. Everyone thinks I have a crush on them.
Like Buddy in Elf, Hank Hooper in 30 Rock, and all blonde women in Bechdel-failing movies, I have Resting Niceface, the opposite of the more well-known Resting Bitchface. It’s generally an awesome thing to have. People smile back, for one thing — that whole sugar/vinegar thing is true! Men rarely demand I smile because it’s already sitting there on my face. People are usually comfortable with me. I get lots of hugs.
But my Resting Niceface also causes confusion. Acquaintances are often taken aback when I don’t smile. People also sometimes don’t listen to my words. More than once I’ve expressed concern about something and had people actually respond like I’d said something positive. A couple of guys have been bewildered when I broke up with them — even after I repeatedly told them I was pissed and felt like I wasn’t being taken seriously.
So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of pretty severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was fine, so I figured that they must have been through something similar and that these things were normal.
This phenomenon has also played a significant role in why I was just recently, at the age of 33, diagnosed with an “invisible illness” that I likely started showing symptoms of when I was eight. I vaguely remember asking a pediatrician what was wrong then after a test for ulcers came up negative. He looked at me as if he could assess my diagnosis from a glance at my face and said, “Oh, probably nothing. You’ll be fine.”
At least as a kid and teenager, my parents took me to a doctor when symptoms popped up, garnering misdiagnoses of asthma, hypoglycemia, and a trauma-induced mental break. But out on my own, I turned to friends with my symptoms. They assessed me much like that doctor, looking at my face and saying, “I’m sure you’re fine.”
So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was okay, so I figured that they must have been through something similar and that these things were normal.
My symptoms morphed over the years, transforming into what looked like a frequent flu in my late 20s. I’d show up at work after taking time off, feeling miserable but apparently looking just fine. Several bosses accused me of faking it, and I lost two jobs due to their suspicions. (Others called me a trooper and told me they appreciated my positivity. It’s a matter of perspective, I guess.) Doctors told me it wasn’t the flu, but most of them too were “sure I was fine.”
I’d reason away the symptoms, chalking them up to my lifestyle choices or telling myself I was just being a baby. I convinced myself it was just a super-duper frequent flu. I told myself that dizziness was very common and forgetting your close friends’ names was normal — just a brain fart! I figured that physical activity was simply not my forte, that some people don’t like moving — ignoring that I was once a competitive athlete. I figured that I was just clumsy and that’s why I was constantly dropping things and tripping — ignoring that my sport had been gymnastics. I decided that I was just allergic to everything, and that’s why I had random rashes and swelling. I blamed sporadic but extreme irritability on both birth control and obnoxious people.
For a long time, it was easy to believe I was fine.
So I groggily adjusted to the new normals, to new mysterious pains, to new frequent low fevers, to new levels of confusion. It wasn’t until about a year and a half before I became homebound ill that “agreeing I was probably fine” turned into straight-up denial.
The flu-like symptoms, extreme tenderness, debilitating fatigue, and tear-inducing “aches” started crashing in on me most nights, accompanied by a tingly pain. I turned into a dreadfully flaky person, canceling on people at the last minute due to my health. Then I stopped making plans altogether. And not long after that, I had to stop working too.
Throughout, my Niceface kept confusing doctors and assuring folks when it needed to be conveying urgency to them.
Eventually, after nearly 30 years, I finally got a diagnosis. Methylenetetrahydrofolate reductase mutation, or MTHFR for short, is a relatively common genetic mutation that is often innocuous — but some types of mutations are more health-adverse. It can lead to heart troubles, infertility, autoimmune disorders, and other kinds of disease. For me, the manifestation was a severe B12 deficiency — nearly low enough to kill or paralyze me.
A year and a half of tests after the B12 revelation, I was also diagnosed with fibromyalgia, another disease of the nervous system. With the help of a complete diet change, gradually increasing exercise, a move to a hotter drier climate, and many other efforts, I’ve made a stunning recovery. I went from being on near-complete bedrest to now working a part-time job and freelancing on my days off.
I’m still a long way from where I’d like to be. Very tiny amounts of activity still exhaust me. I have absolutely no social life; I work, I rest, and that’s about it. I still have talking troubles from time to time, suddenly getting slurry and confused. But I’ve come so far, especially since getting diagnosed. And maybe it’s just the optimistic personality that so often comes hand-in-hand with Resting Niceface, but I bet I’ll make a total and complete recovery.
Meg Hartley 