Itsy Bitsy Teenie Weenie Little Polka Dot Prelude

Transforming your likely follow up questions into elaborate, elongated (maybe unwarranted) answers.

Sorry I gotta be all click bait-y, but you’ll understand why if you wanna read until the end :)

Hello! You all know… some version of me, but all of those versions never had an issue discussing taboo. I have been practicing “letting loose”. Practicing? You might ask. Why would someone need to practice that? For the same reason that I have had countless awkward encounters and accidental insults. If you are someone who was previously caught in the crossfire, it wasn’t your fault.

Turns out, it wasn’t my fault either. I’m just autistic.

But gosh, did I spend hours ruminating over each and every one of those instances! So much that I’ve since been diagnosed with OCD. That might still be valid. In two weeks, my psychiatrist could change it (not necessarily to ASD…), because I will have let the mask slip for the first time. Whatever, who cares? I have spent twenty eight years trying to figure out what the hell I’m “supposed” to do. Guess where it got me? Pretty much un-everything: unhealthy, unemployed, unfulfilled, uninspired. Well, now I’m going to do what I want. I guess some of you have been doing only what you want this whole time? News to me, but now with all of this free time, I’ve got a lot to say.

This is your first lesson in lists; I have plenty of them. I brought up autism first, because that is how I reignited my love for writing (s/o tumblr 2010), but the ‘tism is only the tip of the iceberg. I’m not going to lie and say that I’ve got this whole concept figured out ad nauseum like I usually would, but to brainstorm, I might also post about:

• comorbidities, like dysautonomia, Ehlers-Danlos Syndrome (EDS), ADHD, migraines, sleep disorders, GI disorders, etc.

• my experience with Long Covid + medical gaslighting

• having an amazing PT that has given me some functionality back (thanks, Kim!!)

• being a data driven person and a visual learner

• the rise of English bias in futbol (soccer) ((and how it must be squashed))

• how gossip is essential for survival

• dopamine seeking + how I’ve tackled it

• being a Vietnamese-American kid who grew up in predominantly White areas

• MARINA being the greatest lyricist ever, and I finally want to talk about it!

• my whole catalogue of music really… no one asked for analyses, but I will indulge

• experiencing a vasovagal episode when they clamped my cervix in IUD insertion

• while we’re at it, how about misogyny in medicine as a whole

• dermatillomania… scalp, fingers, lips, inside of my cheeks, you name it!

• being obsessed with personality tests, astrology, House/Lie to Me, etc., because I needed to be told who I was (lol)

Like I said, it’s not an exhaustive list, because I don’t want to pigeon hole myself. There are plenty of topics I care to talk about. Primarily, I am going to discuss how I feel. All I do is feel!

I had to learn that intellectualizing my feelings is not the same as feeling them… woof.

Talk about a paradigm shift.

Most of all, I need rest. I need time to grieve the little girl who always thought she was doing something wrong or wondering why something was always a little off. She adapted into this person that only knew how to be available, helpful, or useful, as a fawn, so they were less likely to notice that she was different.

I’m burnt out. That’s why I am here; this is how The Neurodivergent Burn Unit was born. For the first time in my life, I am asking for help. I am trying to lean on my supports. I am attempting to move forward after being paralyzed for so long.

I will always be transparent about my intentions. Ten dollars buys me two round bus trips to any of my many specialists. The local hospital system is important to me, because they accept Medicaid. I now have excellent care here, somehow with the only POTS specialist in Philly, it seems. Establishing care elsewhere would be a major physical and emotional toll. One hundred dollars buys me a year of an app sub that makes it easy for me to track my macros. Feeding myself is hard! I also depend on Supplemental Nutrition Assistance Program (SNAP), so I try to find the most efficient methods of nourishment. My body is finally receiving the care it has been longing for, and I want to be intentional in how I treat it. Cruising on the free trial, I already feel more energized and well rested. One hundred dollars could also buy me 100 days worth of Trioral electrolyte packets. Subscriptions could additionally cover a new shower chair, a weighted blanket, or Loop earplugs.

Now onto the real question: What do you get in return?

Hopefully, in return, you might giggle. Your curiosity might be piqued. You might be asked to reflect on each socialized behavior within yourself. You might have read this first post and gone, “Oh my god, I didn’t think anyone else felt this way.”

That is the feeling I am chasing.

Enough of “taboo”. Enough of being silenced. Knowledge is power; education is the foundation. I keep thinking this reads like a conspiracy theory, but I still stand by it: they don’t want us to connect, because when we do, we will discover our power to instigate change. So let’s talk!

The first piece I will be sharing with subscribers is a personal narrative. This was requested as part of my autism assessment. I accidentally penned eighteen pages. I am hoping this will hammer home my message and intention of being authentic, vulnerable, and reflective. Even if only one other person feels less alone, it is worth it.

Without further ado, the prelude to the prelude has ended. Here is a sneak peek of the narrative:

Well, I had to circle back to the beginning, because this felt like a central part of the story: this narrative, and therefore you, have become a central part of my live action story. It’s so silly. There is a soft voice, always in a loop, “everything is okay; I just need a moment.” Everyone is freaking out! Yes, I’m smoking a lot of weed, but in order to kick nicotine, I had to replace it with something that at least wasn’t chemically addictive. Once that runs out, I return back to food. I’ve always felt soothed by food, but we’ll talk about that later.

Again, it’s just goofy, because I’m imagining myself sitting on the couch in some weird way, because my head, shoulders, knees, and toes are always hurting. Floating around me like wisps are the people I trust: my partner, my therapist, my friends, my parents, you name it. They all think I am in a crisis when really, if asked to romanticize my life (please do), I’m just having a little creative writing staycation. I am suffering from multiple chronic conditions, some known, most not, after all. I’d love to go away for a week, say to the Poconos, because it’s already becoming hotter and more humid with every day in May. By my own hands, I’m dead ass broke, but there, I would be responsible for… me. Just me! I fear that is the only way I can force myself to let loose. Everyone is freaking out, but I’ve been dancing more than ever. I’ve rediscovered my obsession with Marina and the Diamonds. Fuck, I’m having fun. Sorry! I think I’m supposed to be practicing not saying sorry. But with more and more alone time, writing, music, singing, dancing, and resting, I could be healing. It’s all gonna be okay, I promise! I don’t understand why they don’t just trust me. Whatever. In their defense, this is one of like hundreds of romanticizations I’ve concocted in my head, let alone typed out. Like guys, what if I’m having a creative writing genius moment! A girl can have a maladaptive daydream… let’s go back to narrative v.1.

I’m just going to start typing. Maybe I won’t even edit the whole story. No one has ever asked to hear the Internal Monologue™ that I thought everyone had, and I know how self critical I can be. The only true narrative, I think, is what my mother likes to call: “open mouth and insert foot.” No clue if that’s punctuated correctly, which my mother would also disprove of, but like I said, I’m attempting to honor my true voice. I’ll get to all the mom stuff eventually. My sister and I shared a hearty laugh over her description of my strengths and challenges. I figured having third party statements from some of my family would be the most insightful.

The Stuart Family is an echo chamber of “everyone feels that way” and “that’s normal, you have to push through”. Pushing through has been fucking hard, holy shit. The whole time I’ve been agonizing over how someone as privileged and loved as me could feel so… empty? What the hell is wrong with me? Why can’t I be grateful for what I have? Every now and then, I have an urge to consume some emotionally violent piece of media (the moment for Schindler’s List might be near) that reminds me, well, others have it worse. Others can have it so much worse, perhaps they can’t advocate for themselves. So it’s my job! It’s my job to be an advocate, because I can handle it! I can totally handle it. This is handling it, right?

My partner came down and distracted me, which is okay, but for the first time, I am acknowledging how difficult it is for me to transition back into something that I’m focusing on, like writing. Writing is one of many on the list of careers that I would have loved to pursue if I didn’t have to follow The Rules. Guess who had the revelation of subconsciously following them all this time?

It’s a dangerous game. I actually took a peek at my tumblr earlier with the intention of starting this narrative after a little blast from the past. However, it was 1) embarrassing, maybe like all things circa 2010, 2) dramatic, and 3) depressing. I had to take a nap. I guess I thought I reconciled with all of those feelings. I’ve been in therapy for at least 5 years. I’ve been treating my obsessive compulsive disorder with medication for about 2 years. I earned a bachelor’s degree in biochemistry and molecular biology; I had a job in a pharmaceutical lab doing biophysics research. I rekindled my tumultuous love with soccer. For six years, I’ve been in a relationship with someone I’ve known since I was 12 and reconnected with at 22. I was experiencing being a part of a large group of friends for the first time after escaping the hell that was college. I had it all! I did it! Whatever “it” is, is fucking exhausting, and it always affirms my choice to be child free. How could I ever bring a child into my mess? I can hardly take care of myself.

[Author’s Note: Can I do this? I guess it’s my paper. Anyways, this is where I had to stop after simultaneously being interrupted and not wanting to bring all of these feelings to the front in the presence of him.]

Reaching into my brain for past experiences - teenage angst, heartbreak, isolation, suicidal ideation - is a dangerous game. I am out of energy. I know what going “too far” looks like, in a clinical sense. I know exactly how to answer the questions that matter. My mask sits atop the bridge of my nose, like a pair of readers, easily accessible by the noose around my neck. Somehow, I have perfected balancing these glasses ever so slightly on the round tip of my nose, allowing myself the swift ability to look on or look through. These delicate lenses are still worn in both my individual and couples counseling. Believe me, I want to take them off. Sometimes I do, like right now, when I am home alone. When I know I am not being perceived. But I want to take them off permanently! I really want to, but I’m scared.

[Author’s Note: I am literally so fucking bad at transitions. I bet every essay I ever wrote for academics had the same critique. “Create a flow of conversation between paragraphs.” WHAT DOES THAT MEAN??? Ugh.]

I think I am just going to get into the formative idea I had loosely planned in my head for this narrative. Music is my everything: my motivator, my comforter, my voice. It has always helped to identify my feelings and to allow myself to experience those feelings in a calmer fashion than I would elect on my own. Sometimes I sing along, sometimes I cry, and sometimes I scream-sing-cry. I have a tough time finding new music. Maybe I’m more comforted by sounds and loops I already know. Different albums represent different phases of my… hm. I am (in live time) realizing that one of the questions in one of the screening assessments asked about accessing memories in a special way. I think I said I didn’t, because I don’t, at least not exactly like the example that was given. LOL. That was an unintended lie. I so perform that function in my brain with music albums. Anyways, one of my favorite albums of all time is The Family Jewels by Marina and the Diamonds.

[Author’s Note: I got distracted when googling to verify the year of the album (2010) → reading about how it was composed → an independent music magazine compared it to some Danish philosopher → sorry his name was Søren Kierkegaard and apparently he was the first existentialist… how fitting.]

It’s crazy because I could easily go on like this for five pages, but at a minimum, you did request a history on me, so I will divulge. The Family Jewels was released the same year as my blog; I was thirteen years old. Now known as MARINA, she feels like the only way to safely access those memories and feelings. I still believe in every song’s sentiment the same way I did fifteen years ago, but now I’m even more tired. Once I tap in, I’m not sure what it looks like to crawl out. The possibility of liberation is enough to keep me going.