Queer, neurodivergent, disabled chaos gremlin | Connection Strategy, Compassionate Marketing, and Community Building for Low-Capacity Online Business Owners. Follow @CaseyConnects on Threads+IG.
It is Martin Luther King Jr. day, inauguration day, and -Ā sighĀ - my 27th birthday.
Iām writing this in aĀ co-writing groupĀ hosted by my business-bestie-big-sisterĀ BridgetĀ (which I religiously attend every week, though this is perhaps the first meeting in months where I have written something solely for myself).
I have so many words and thoughts and things I could write about - so this is probably going to be a collection of (very incomplete) fragments that donāt really make sense all together, but I hope that thereās at least one sentence in here that makes half-sense to you.
(Read the full ramble on Substack, or click below.)
The past 20 days have beenā¦ pretty rough.
Between the Los Angeles fires (which are still ongoing) and various announcements and daily changes from Meta and TikTok and the outgoing administration and the new administrationā¦ Itās been so rough.
I havenāt wanted to do marketing or business or content creation - none of it, despite being in financial circumstances that are near-constantly āfairly badā and occasionally [insert string of expletives here].
I feel as if Iāve used up all my brainspace and spoons for the whole year and it isnāt even February.
About the Orange Man in the White House:
I am a queer woman.
(āQueerā as in not heterosexual, not allosexual, and not cisgender, and āwomanā as in ānot exactly or exclusively, but itās the closest word within my grasp right nowā or āwe donāt have time to unpack all of that.ā)
I have a nonbinary twin sibling.
And I am terrified for them, and for all my queer friends, and for all trans and nonbinary people in the United States.
About the State of the Internet(?)
I am confused, overwhelmed, depressed, and angry, and the online space is changing so fast I can hardly keep up with it, and because the online space is not separate from offline space or āreal lifeā or āthe real world,ā and is in fact just an extension or reflection or part of themā¦ Well, that just makes everything harder, doesnāt it?
ButĀ with regards to Meta platforms, specificallyĀ ThreadsĀ andĀ Instagram,Ā I am staying.
As userĀ white.rose.witchingĀ put it so beautifully on Threads,
āIf we keep running from hate weāll always be running. Deciding to stay, to bloom in adversity, to take up space where very few systems have your back is not easy or safeā¦. But I also think it is incredibly necessary.ā
As so many others have said, I understand those who are choosing to leave Meta platforms behind. I donāt blame or judge you - I want you to be as safe as you can possibly be, wherever on the internet or in the world you are (even though thatās gonna be even harder these next 4+ years).
But as a neurodivergent, chronically ill, and disabled woman, I owe so much of myself as I am today to the online spaces that have shaped me.
(For example: If I had not found solace and solidarity in the disabled community on Twitter during the initial years of the Covid-19 pandemic, I would not be alive, and thatās just a fact.)
SoĀ I am staying on Instagram and Threads,Ā though I want to try this year to reduce my dependence on them and expand (in inches, not miles, to other platforms (I have already made accounts onĀ Pinterest,Ā YouTube, thisĀ SubStack, and most recentlyĀ Tumblr).
I am not making any big commitments regarding posting frequency and whatnot.
At this moment, I am committing only to this:Ā to try to give myself grace as I engage in the difficult and terrifying practice of ābeing seen trying.ā
Thatās about it.
It feels odd to be writing again (likeĀ this, I mean, as opposed to writing Instagram captions). But I think itās good.
Writing again, having a Tumblr againā¦ I think the teenage version of me - shy, anxious, full of ideas and overwhelm (though thatās still me now), prior to joining online spaces and discovering and embracing my identity as a queer, neurodivergent, disabled human - would be proud.
HappyĀ (not really, not at all, but we will get through it together)Ā birthday, me.
ppl keep reblogging this and asking āwell what are the medicine ads like in your countryā and likeā¦there arenāt any? Itās literally illegal to advertise prescription medicine here?
Yeah Mr. Darcyās proposal was a complete turd and a half but you gotta understand.
You got your life together. A good career, stable income, retirement plan, all that shit together. And you meet this girl. And sheās everything. Clever, outspoken, funny, calls you on your bullshit. Grade A cutie, right? And she doesnāt go out of her way to spend time with you but sheās nice, and sometimes you catch her looking your way in a way that makes you think you might have a shot.
But her family. Holy shit.
First off, itās p much ALL women, and mostly UNMARRIED women, which at this time means of something happens to her dad then youāre financially responsible for like. Four grown ass adults, potentially forever
Because mom in law is DEFINITELY gonna need someone to take care of her when dad in law kicks it, and they have like. NO money. So already youāre accepting that if all goes well, youāre gonna be one random old bagās retirement home. Thatās expensive and exhausting, yeah? Imagine asking someone on a first date knowing that if they say yes and things go good her high-strung chihuahua mother is gonna move in with you. IMAGINE.
And girlyās other sisters. Well, one is a sweetheart, yeah, so she probably wonāt be an issue, but that still leaves three more, and two of those ones are INSUFFERABLE. Never went to school, dumb as rocks, spend cash like itās toilet paper
And while one of the two is young still and might grow out of it the OTHER one is actively torpedoāing her entire familyās reputation by wandering off with random dudes and chasing ass. Sheās never gonna work, she canāt build connections, sheās a fucking sinkhole, and sheās being led on by the same goddamn con man ass leeching tit whoās been bleeding you dry while telling anyone whoāll listen that your family is full of ratty thieving bastards.
And if he dumps her after a week- WHICH YOU KNOW HIS BITCH ASS IS GONNA- youāve got a SECOND UNMARRIABLE GROWN ASS ADULT TO PROVIDE FOR. And you KNOW sheās gonna be a tantrum-throwing little shit about it, and itās not like you can lock her in the basement or something, youāre gonna have to bring her fucking. Everywhere. And give her an allowance and shit while she contributes zero, because again, she NEVER GOT EDUCATED AND HAS NO MARKETABLE SKILLS. Sheās not even good to TALK to. FUCK
So youāre looking to the mom and finally itās making sense how she got that twitch in her eye and as MUCH as she is youāre starting to realize sheās the SMART one, desperately throwing her armloads of girls at random men like theyāre a bunch of fucking lifeboats bobbing around a sinking ship, like yes Jesus Christ sweetly that life boat IS old and ugly and kind of boring but for FUCKS SAKE PICK ONE
And you look back at this girl who is ALSO REFUSING THE LIFE BOATS BY THE WAY and god damn it sheās still the most radiant thing youāve ever seen so fine, fuck it, Christ alive, youāll do it. Youāll shoot your shot. Sheās everything youāve ever wanted in anybody abut itās not even just about that anymore, itās about being her best fucking shot at a future, and even if she doesnāt like you all that much sheās still gonna say yes and that might break your heart a bit knowing itās about the money but who knows, maybe it will at least be civil, or companionable, and even if she doesnāt LOVE you at least youāll know sheās well and cared for
And so youāll do it. Youāll take on the neurotic stress mess mother in law, the absent father, the broke ass wingnut no brain no money no future airhead sisters, the bad mannered relatives and the embarrassing behaviour and the impending future of sharing your entire shit with a clown parade of freeloaders, youāll risk it all and accept the absolute certainty of financial ruin and emotional exhaustion for the rest of your whole ass life and youāll make your own family deal with it too, youāll do it, youāll fucking DO IT, you stupid lovesick motherfucker
And so you go to this chick like ālook. Your whole familyās a shitshow. Youāve got fucking nothing and youāre gonna die on the street. But for some reason- and I donāt get it either- Iāve fallen in love with you, and I wish I didnāt, but I did, so Iām telling you that whether you like me or not, Iāll give you everything. Iāll give you everything even if itās the dumbest shit I ever done. Fuck my stupid Baka ass, Iāll marry you.ā
And she looks at you- having heard or considered absolutely none of your months-long internal debate and monologue- and goes āThe fuck did you just say about my family, you son of a bitch?ā
And the shock of that is enough to jolt you back into a reality where you are able to actually hear and process what just came out of your damn mouth
And yeah
I'm already seeing advice from people in the US to purchase queer books and other banned or "controversial" books on paper as a way to combat the wave of government censorship that is coming. While this is a good idea (it is! absolutely!), it's not accessible to everyone, and truly, we're not going to be able to consumerism our way out of this one.
If you can buy the books, do. Whether you can buy the books or not, borrow them from your library.
Borrow the paper versions. Borrow the ebook or audiobook versions. Request the titles you want that your library doesn't have. The more a title circulates or is requested, the better librarians are going to be able to defend keeping it if and when it's ever challenged.
Use libraries like @queerliblib too. The more members they have, the better they'll be able to fundraise.
Your community resources depend on you using them. Borrow the books before they go away.
InB4: Piracy is not the solution here. We're trying to keep community resources available, not make sure individual people can read individual books. Different problems.
The books are still available. Borrowing them from your library and returning them on time and in good condition will help keep them that way.
If youāre an American federal employee and got an email saying āitās ok to quit your job.ā Do not, for the love of everything, quit your job. This is purely a scare tactic to get rid of as many people as possible without legal consequences.
Obviously, Trump has realized firing everyone in the government will be harder than he thought because of robust legal protections so heās trying to scare or trick people into leaving instead because he knows they can block and slow his fascist agenda. Donāt let that happen. If youāre in the civil service, your country needs you; stay in your job and protect the constitution. And if youāre not in civil service, do what you can to support the civil service, including calling your representatives and asking them to protect civil servants.
Important addition: the email was almost WORD FOR WORD the same email sent to Twitter employees after Musk took over. It does not consider Federal employee rights or regulations, parts of it make NO SENSE WHATSOEVER (you resign but will be kept on active payroll and simply wonāt be given work or need to come in. For 8 months.).
8 months pay with the ability to get a new job is very tempting, especially for lower-paid workers. All that extra money could really cover some gaps and relieve financial pressures. Itās tempting. I get it.
ITS ALSO NOT LIKELY LEGAL AS WRITTEN AND YOUR AGREEMENT COULD ACTUALLY SCREW YOU. Thereās a reason so many of the recent EOs and initial memorandums are getting halted or rewritten - no thought or research was given to what they can do given actual regulations and union contracts. Because many are coming from Musk via DOGE, and Musk has NEVER had to deal with unions, federal employee regulations, and strong opponents capable of fighting back HARD with decades of legal precedent at their back.
Reality seems to be hitting as an afterthought to all the shit spewing like a firehose from this administration. Donāt react to the first edition of ANYTHING. Given it a few days and see what actually can be done.
Right now, r/fednews is the biggest social media hub for federal employees anywhere; you can find resources, advice, news, memes, and encouragement there.
If you're not a federal employee, feel free to pop over anyway for information, and please send well-wishes! They really need it right now, as their jobs are so so so important but not very popular or prestigious, and now the wealthiest and most powerful people in the world are trying to take their livelihoods.
The architect of Project 2025, Russell Vought, is now Trump's director for the Office of Managenent and Budget -
ie, the main guy who created Project 2025 is now the topmost-level manager and coordinator of all federal agencies.
His vision for federal civil servants, in his own words:
"We want the bureaucrats to be traumatically affected. When they wake up in the morning, we want them to not want to go to work because they are increasingly viewed as the villains.
We want their funding to be shut down so that the EPA can't do all of the rules against our energy industry because they have no bandwidth financially to do so.
We want to put them in trauma."
Project 2025 specifically targets federal civil servants for a reason. They are the essential first and second lines of defense of the US democracy and the fascists know it.
And if youāre in the civil service weāre all rooting for you. You are heroes. Even slowing him down buys valuable time to defeat the fascist agenda. Defend the constitution. We stand with you. Hold the line! Donāt resign!
Iām still tweaking it, but something the Visible app has hammered home these past few weeks is just how much energy my body expends existing.
Currently lying perfectly still and Iām in the āexertion zoneā because Iām in so much nerve pain it's making my heart rate elevate.
Being in pain is burning up my pace points. Iāve used two since I woke up this morning simply by being conscious.
Anyone who dismisses the effects of chronic pain on the body or tells you to exercise to push through it is formally invited to throw themselves into the sun.
Like it's one thing to know this on an intellectual level. It is another to actually watch it happening and have your phone send you a little āhey, you should take a breakā message when youāre already lying down.
Hi, i don't know if I've missed your posts about it before but could you talk more about this Visible app?? As someone with ME, it sounds like something that could help me :D
Iām pretty sure this is my first time mentioning it on here, but the Visible app and armband were designed to help people with energy limiting illnesses better track their symptoms and hopefully avoid crashes.
It was specifically designed for ME and other similar illnesses.
Visible provides the tools you need to understand your energy-limiting condition. Use data to pace your activity, manage your symptoms, and
Thereās a free version you can use that utilizes the camera lens on your phone to give you a rudimentary baseline each morning which I used for quite a while.
I recently upgraded to the paid membership and armband (their eventual goal is to have to app be free/covered by health insurance. The memberships right now are helping pay for funding/research.) which offers real-time heart rate tracking to better measure how much energy youāre expending during activities and to also warn you when youāve been in the exertion zone too long and are at risk of crashing out.
It designates daily pace points based on your morning check-ins and overall average over time.
This morning, my morning check-in gave me an energy rating of 2/5 based on my heart rate while still lying in bed, so today is a day when I need to be more mindful of what tasks Iām able to complete without over doing it. Which I was already aware of, I woke up feeling awful, but I probably would have ignored it without seeing the data in front of me.
It also means Iām personally at a higher risk for migraine so Iāll be limiting my screen time as well after this until I feel a bit more ālevelā.
Like I said, Iām still tweaking it, but Iāve found it overall helpful. Iāve managed to avoid PEM crashes several times by listening to it.
I do find it funny that sometimes my smartwatch will be like, āIt's time to move!ā and the Visible app is like, āAbsolutely not. Keep your ass down.ā Just a fun little contrast between a watch thatās designed to promote fitness and one thatās designed to help with responsible pacing and symptom management.
I continually hear such good things about Visible. Definitely want the armband though it's still a tad out of budget for me right now. But I've tried using a Fitbit and other apps for tracking my energy levels and it truly does not work lol. I'd be so interested to actually have data and evidence of the f*ckery my body does even when I am "resting."
Hey all.
The good news: Iāve found true love.
The bad news: my lonā¦ Ship D. needs your support for Help Me Get My Partner Wi
Hey all.
The good news: Iāve found True Loveā¢ļø.
The bad news: my long-distance partner is disabled with worsening chronic illness and struggling to live alone in a state with very poor medical care. Most recently, a flareup of what we suspect to be MCAS (Mast Cell Activation Syndrome) has worsened every other ailment and severely limited what my partner can safely eat, touch, and inhale without risk of anaphylaxis.Ā
This is scary for both of us. Iām in the process of trying to relocate, but my partner needs more support than can wait on me to find a remote job I can take with me. This GoFundMe is to help me afford to take time away from work (I do not get paid leave of any kind) and help get my partner stabilized with frozen meals and medical travel.Ā
What your donation will help me cover:
-travel expensesĀ
-food for me so I can avoid draining my partnerās supply of āsafeā foodsĀ
-loss of 3 weeks income as I take unpaid time away from workĀ
-more freedom to experiment with what my partner can safely tolerate; with MCAS, the only way to learn what is safe is through trial and error, as what is tolerated by one person may not be tolerated by anotherĀ
-any excess will go towards safe foods and other caretaking and accessibility needs
Thank you, everyone. I donāt know what to say. Your extraordinary generosity is going to allow us to get mold testing and make accessibility changes that will help my partner maintain stability while Iām not there. Iām overwhelmed by the kindness you have shown us both. This makes the kind of difference I wasnāt even allowing myself to daydream about. š
Iām going to keep the fundraiser open for nowāanyone with or around chronic illness knows what a money sink it can be, especially while struggling to find capable providers or mitigate environmental causes.
