Ok so i'm fighting a literal war to get an autism test that has been going on since November. The latest thing my therapist and psychiatrist said to me is "If we find out that you are on the spectrum, you might start to justify yourself for your behaviors instead of getting better".

Control beyond the NT bubble

Today, as I was looking at the ceiling, butt in air, head between legs during the stretching section of dance class, it occurred to me how good of an analogy dancing can be (at least for me) for my mental health issues, and the amount of control I have over them.

It's a common misconception that if you know your conditions, you automatically control them, and I don't think the community needs to be reminded why that's a terrible mindset to have towards mental illnesses and disorders in general. Especially because the neurotypical definition of "control" is maintaining an image made by them for them.

Psychology is one of many special interests I have, and so ever since I found out I might be autistic at 16, I researched the topic any chance I could, getting deeper and deeper as the years went by and my struggles worsened, and then did the same with every subsequent diagnosis I received. I'll always have something new to learn about myself and other people, which is amazing, but I think it's safe to say that not only did I catch up to my neurotypical peers but surpassed them in self-awareness and self-control. And I'd like to add that I think that the same goes for all of you comrades out there, and we don't get the credit we deserve for our efforts.

I'm pretty sure that I'm not the first one to make this analogy, but I hope whoever finds it, someone affected or a neurotypical family member of theirs, that they can learn from it and help others understand the struggles we face on the daily.

I have (among a boatload of other mental f*ckeries) Autistic Spectrum Disorder, which you may have heard about. One of the lesser known symptoms related to autism is muscle weakness and movement coordination issues. This is why it's usually very easy to detect in small children, because they develop differently when it comes to motor functions, either they are delayed or atypical. Examples of this are walking and running around with lifted heels, poor posture, not being able to sit on the floor without supporting themselves with their hands, etc.

Let me tell you, I struggled with this sh*t. Hard. Several of my lovely P.E. teachers I had during my school years humiliated and berated me for my clumsiness and weakness, and I've grown to hate sports and physical activities pretty fast after all that.

I really wanted to dance though, considering I loved and lived music, the rhythm, which I had a really good ear for thanks to my autism as well. I went to many dance studios, and I quit all of them after just a few months out of frustration, because none of them actually taught dancing, rather they just had choreographies; no basics, no proper workouts, lot of the times even the warmup was seriously lacking. My current dance school however is f*ckin' amazing. It's contemporary hip-hop, a style I specifically was looking for, and we learn basics, have proper workouts and the teacher actually taught me many very important things about the workings of my body, balance and muscles.

I know how my body works now, after years of struggling to find a proper teacher, and yet, I still have to learn for years to become a halfway decent dancer. I know which muscle groups serve what function, I know where I have to put my weight, I learn the choreography fast, my sense of rhythm is probably impeccable, and yet, I still can't do a lot of the moves we learn. The reason is simple: as of right now, I am malnourished (from not eating properly during quarantine), my muscles (especially my core muscles) are weak, I am still recovering from an injury I left untreated for months last year and I still have movement coordination issues.

I have to constantly put in the work to maintain even a basic amount strength needed for proper posture. I had to put together a workout plan that has segments dedicated to posture and balance, attend private classes, practice choreographies at home, go through a lengthy stretching routine after every workout because I'm so inflexible... All work that you don't see.

You don't see the struggle, the hard work, the many hours I put into practice, my tears of frustration whenever I can't do something for the 100th time, my self-hatred when I see everyone else being able to do what I can't even manage on a basic level. Today for example, even though waackin is one of my strengths in dancing, I absolutely butchered the whole segment in the choreography, and then I had to do my best to ignore how much more flexible everyone else is in the class just I don't have to feel that deep sense of shame I always do when faced with my shortcomings.

You only see the videos I post at the end of each month when we record the choreography. You only see the performance.

And that is the same thing I have to go through just to have as close to a normal life as possible. I have to plan everything, what I eat, how I dress, what I pack (be it travelling or just a standard day), how I travel. I have to write down guides on how to handle my anxiety, how to go through a morning routine, how to get ready for a dance class. I have an app that guides me through the day, telling me when to eat breakfast, do my workout, take a shower, stretch, create, study, plan, read, basically the whole day's schedule, because without the reminders and the alarms I'd be lost and confused and overwhelmed with everything. I practice how to talk, how to move, how to present myself in certain situations, how to mask and how not to mask...

Without all that work behind the scenes, I wouldn't be able to lead a life, and I still struggle a lot. I have bad days where I can't even bring myself to eat, when the confusion and anxiety of every task I have to do overwhelms me, when I have a meltdown and become exhausted for the rest of the day.

I am constantly getting to know my conditions and adapting to them, to the world, to my friends, to my own life and I have to work extremely hard where a neurotypical person wouldn't have to do anything. In certain aspects of life, I'll never be able to turn on autopilot, and I'll always have to put in the work and the awareness most people won't have to.

I am in control. I really am. Thing is though, you can't even imagine how much work goes into an action of mine you wouldn't even need to think about.

Often times, people tell me they envy my dance skills and say that they wouldn't be able to do the same because "they're not a natural like I am". And the thing is, any dancer would spot my many weaknesses and shortcomings, and would know how much hard harder I have to work than most people, just as other mentally ill people can tell how much I struggle just so I can leave my apartment on some days.

So in reality, I am in control, so much more than you think. I am self-aware, so much more than you'd imagine. I am in control of things that are automatic for you and I am aware of things about myself you'd never even have to think about.

But no, I will never reach a level of control where I can "hide" my illnesses and disorders, just so you're more comfortable and I don't inconvenience you. Because the world is so much more than your bubble of ignorance, you can't even imagine.

Because not everyone aspires to take on a role in your neurotypical play. And that's completely fine.

— Persephone

I wrote 2826 entire words before I collapsed last night

I have been seriously struggling this academic quarter. And I seriously struggled last academic quarter. As I did in undergrad, and in high school, junior high, and elementary. But I do not have any learning disabilities. And you have some idea of how smart I am in general, but I’ll share one specific example about just how very academically intelligent I am. On the SAT, I scored 700 in reading, 730 in writing, and 780 in math and I did not study for it. I spent most of the test bored and waiting for the allotted time to run out because I finished nearly every section way early. Early enough that at one point I had enough time to leisurely leave and use the restroom and came back before everyone else had finished. The only reason I did not score a perfect 800 in math because I missed *exactly* one question. I can still remember and visualize exactly which one it was – and only I missed it because it was the second to last one of the last math section and my brain read the word ‘diameter’ and was tired enough that my brain went ‘oh cool, radius’ even though I could have easily solved that problem when I was 11 or 12 (if you haven’t already gone “wow, she’s got some serious perfectionism issues” then now would be a good time for you to do so).

All of this to say: it has never been a question of not being able to understand the content. Very, very rarely in my entire scholastic lifetime have I ever not understood what was being taught to me. It is – and always has been – a matter of not being able to sit down and do the work.

One of the rubs of being so smart (especially when also socially inept – I don’t think I’ve ever had a formal diagnosis, but I would be astonished to learn if I wasn’t somewhere on the autism spectrum) is that your sense of self-worth is all too easily conflated with your intelligence and academic performance, placing massive pressure on yourself to be good at school, ‘cause that’s one of the few things I was reliably good at. 

Most of my school-age bullies, particularly the loudest ones, were just as smart as I was: all enrolled in the same accelerated classes, but they didn’t struggle the way I did, and they definitely saw it, and made sure I knew they did. They could all do their homework and turn things in on time, but I just couldn’t sit down and do even the simplest assignments sometimes – let alone the big projects and reports, not without crippling deadline pressure. My parents and teachers also tended to view the situation as if there was some kind of issue with me, too: that I was lazy/disorganized/not ‘applying myself’/needed discipline and punishment and then I’d be fine – alllll of that unhelpful bullshit.

Nobody thought that I wasn’t smart enough, though. Clearly, I was always great on tests: sit me down and ask me what I know and if there’s a definitive correct answer then odds are good that I knew what it was, so I excelled in math and science, and I took great comfort from knowing what I was doing and working familiar problems over and over. But having to go find sources for research and report on something or answer essay style questions – anything subjective or humanities-ish – was my kryptonite. I couldn’t ever say “this is enough information, this is complete and I’m done now” – once I started searching I’d drown in all of the information available and not be able to pull myself out with just enough to get the job done. I would become paralyzed simply by the thought of needing to sit down and do schoolwork, so I’d avoid it and distract myself with reading or anything else BUT schoolwork. And if I ever fell behind (which ALWAYS happened because that’s what happens when your avoidant coping is your default), then it was like pouring anti-napalm on everything: I’d be even more frozen and unable to function, like cold terrified acid licking through my veins. I have been a student most of my life – 21 and a half years to date – and the entire fucking time I’ve been limping along like this, always hoping at the start of each new term that This Time, somehow, I could Just Do It Already The Way I Should Be Able To, but over and over that optimism has crumbled to ashes in that undying flame of fear, paralysis, self-disgust, and despair.

I am able, now, to identify and name what I have suffered from my entire life, the condition that I was made to carry so much crippling SHAME for, that I learned to hide almost completely from all of my loved ones for over a decade so nobody would see that shame and decide to think less of me.

I have anxiety and complex PTSD. 

Where one ends and the other begins isn’t worth the effort of trying to tease them apart. The DSM-5 is an imperfect tool and no diagnosis is a uniform monolith – anxiety, PTSD, depression, and every other name of every other illness is merely a professional shorthand for “all/most of these symptoms are present.” It makes much more sense to treat my anxiety and PTSD as a single condition. Moreover, I have a strong suspicion that my endocrine disorder, PCOS, was triggered by the chronic stress/elevated cortisol and insulin (because one of the most socially acceptable ways for our nervous systems to regulate and soothe themselves when under stress is with food), and if it isn’t completely just part of the same thing, then it’s LARGELY overlapping with the anxiety/PTSD (I know that my mother and grandmother suffered in a very similar way in school, and I know that the PCOS is tied to inherited/ancestral trauma, so it makes every kind of sense if the anxiety/PTSD that we all have is related as well). 

I have had a generalized anxiety disorder diagnosis on my chart for years, and I’ve known, in my rational brain, that I’ve needed to get it under control to feel better and function in school (and to be honest, with almost all other professional/adulting things too). But thinking about what I need and actually DOING something about it are such utterly different things. It has only been in the past few weeks that I have been able to admit to myself that I need real, professional help to overcome this condition – and to ask for and start receiving that help. There is a big culture in my family, especially us women, about ignoring our own issues and focusing on helping other people first (I know I must have written to you about this before), so this has been a massive step for me. 

For a while I’ve been struggling to stay on top of my classes, and have fallen behind in all four of them, and the feeling of being overwhelmed has only increased exponentially. I’ve wanted, desperately, to go to an emotional ER so many times the past month, so much so that I found myself wanting (and knowing on a deep level that my body needs) some kind of pharmaceutical support to get me through the fucking day and allow me to do some of the massive, teetering pile of backlogged work. Upon hearing about my experiences of paralysis and dysfunction, and scoring very high on the anxiety diagnosis questionnaire she used, my doc, who rarely reaches for her Rx pad off the bat, suggested putting me on Clonidine (non-addictive, originally developed for hypertension) especially after my double-checked at-home blood pressure reading was 154/80 (which is consistent with STAGE 2 HYPERTENSION in an otherwise healthy and young TWENTY-NINE YEAR OLD for fucks sake)(insert emojis denoting ABJECT PANIC here).

I am comforted by the fact that my doctor, who I’ve seen since I was a tweenager, has shifted in the past few years to specialize in treating addiction and substance dependency, so if there’s anybody who I can trust to medicate me without causing a chemical dependence it’s her (thank GODDESS). Dr. M agrees with my perspective that the meds are just a temporary measure to alleviate my symptoms enough to function, and that the true treatment is the therapy work that I’ve been trying to do for myself, but there’s only so much you can do all by your lonesome, no matter how many self-help books you read (and goodness knows I’ve read a TON).

So I also finally started seeing a therapist (!), and just admitting some of this out loud to another person has been so profoundly healing. Our second session was this past Wednesday, and I was able to start opening up and telling her that I think my anxiety traces back to ancestral trauma and how I feel called to use a bottom-up, somatic approach (hence my recent interest in shamanism, ritual, soul retrieval, transpersonal psychology, etc., which she’s totally accepting of; again, THANK GODDESS).

One of the many many many self-help books that I’ve had my nose in is “The Instinct to Heal: Curing Depression, Anxiety, and Stress Without Drugs and Without Talk Therapy” by David Servan-Schreiber, MD, PhD (which I started reading like a day before I finally admitted that I needed to take drugs and do talk therapy *laughing at myself emoji here*). Servan-Schreiber beautifully articulated the relationship between our neocortex: the newly, highly developed, outer portions of the brain where our logic, reason, cognition, and consciousness arise from, and our limbic system: the older, more primitive inner section of our brains that controls our unconscious, autonomic physiological processes (like breathing, digestion, heart rate, etc.), trauma, instinct, intuition, and emotion, and is therefore far more deeply and intensely connected to the body (and bodily held memories) than the neocortex. 

I’ve been running around in my rational, conscious, neocortex mind *thinking* about all of my issues and traumas and everything for ages, and I understand so much about these things on that rational level – but that is miles away from the irrational, unconscious, limbic bodymind where all of those traumas actually ARE and continue to play out over and over as if they’re still happening. This is something that my therapist helped me understand – our neocortex understands that this is a different time and the thing that happened in the past is over and done and we’re safe now, but the limbic system has no sense of time. In our irrational reptile brains, everything still exists the same as it did all those years ago as if it never stopped happening. THIS is where our inner wounded child lives, where a soul fragment likely fled from for safety in the midst of the unendurable whatever-it-was that precipitated the trauma response, and where the empty spot is where it needs to be called back to still resides, open and waiting and longing. 

THIS is why I’ve felt called towards the irrational, mystical, shamanic modes of healing: I’ve done as much as I can with my rational mind, which cannot be used to solve an irrational problem or heal an irrational wound, which is what all trauma is. A couple of weeks ago, when I asked you for your help as a shaman with conducting a soul retrieval, this is the kind of work that I was starting to realize that I need to do. The crazy Thing That I Did that I told you about (and meant to describe for you more at the time but I was exhausted and desperately needed the rest instead) was a small and beautiful spontaneous retrieval of a part of me when I was seven, a part that was thirteen, and a part of me as a young infant that I brought to my own breast in recognition that I was both deserving of my own love, nourishment, and care, and capable of being a loving, heart-centered parent to myself. I felt all of the past, younger versions of me that I’ve already been gathered in concentric circles within me, and all of the older versions of me that I’ve not yet been spiraling around me, and my ancestors and guides and spirits and all of the love and kindness that anyone has ever directed towards me gathered around all of me like a compassionate embrace, and I think that it was that experience that gave me just enough of my soul back, just enough juice and magic that I could start digging my teeth in and taking the steps I needed to take to seek treatment and get my legs back underneath me.

As amazing and beautiful as that experience was, it wasn’t everything that I need in order to heal. I want to do a soul retrieval/healing ritual to unfreeze the part of me (and the part of my mother, grandmother, and other ancestors) that is stuck in that root trauma – where the anxiety, complex PTSD, PCOS - where all of that junk stems from. I don’t yet have much sense at all what that’s gonna look like, but I know that it’s gonna be the biggest damn spell I’ve ever cast, and that I don’t think I can cast it alone. Watch this space.

I do think, though, that preparing for that is the thing to do for now, by accumulating small things on multiple fronts – growing my strength, calling back small parts of me, telling more and more loved ones about my truth, chipping away at the stack of things to do, continuing with meds and therapy, contacting my professors and possibly the department/program admin (with a letter from Dr. M in hand documenting my diagnosis and treatment) to let them know that I need help I’m figuring out how to make up for assignments that I haven’t turned in and make sure that I can continue next quarter and not get kicked out of the program. I’m still carrying a lot of fear of failure/expulsion around this (and anxiety = paralysis = inaction for me, even though I desperately want to fix it) – especially after handling myself so badly in a similar situation at the end of last quarter. When you’ve got a minute, I’d appreciate a pep talk about broaching the subject with them.

All in all, I’m doing well and things are looking up in a way I’ve NEEDED them to start looking up for literal decades. I’ve even been able to start telling my mother about how badly I’ve been doing (she knows I’ve seen my doctor and started therapy and meds) and allowing her to see that pain and struggle after years of hiding it from her out of shame has been scary but such a relief. But Goddess Knows I’ve got A LOT to do still. Just cause I’ve finally struck a match and can navigate a little better doesn’t mean I’m out of the dungeon yet.

I began the meds just yesterday, and I’ve spent the day decompressing (never been a better time for me to have a few days all to myself kitten-sitting for some friends while they go to a tiny, COVID-regulation compliant thanksgiving visit with their family in Portland). Drowsiness is a listed side effect of Clonidine, and I was really worried that my prescribed dose was too high after being soooooo tired yesterday and today after I took the pills, but my increasing suspicion is that I’ve just been so high-strung and hypervigilant (hello super premature hypertension!) that the anti-anxiety/BP-lowering drug just uncovered the chronic e x h a u s t I o n that was already (always) there, rather than them making me drowsy when I wasn’t. So I’ve spent the day eating my friend’s leftovers (she’s an AMAZING cook) and cat napping with the two sweetest little troublemakers you ever did see (I’ll send pics!). 

I think that FINALLY being able to relax like this was what helped me to begin to be receptive and start opening up (and connecting with you!) again. Anxiety = I clam up, my libido nosedives, and my pelvic tightness/vaginal armoring gets painful and rigid – all bad prospects for wild, sexy, blooming Love-Lust-and-Light fun. I was so glad to reconnect with you – and that you reminded me that I need to get this out and I can process it and heal it by sharing it with you – that our Sacred Space is still there for me to use and pour my pain and magic and consciousness out into.

I think that’s all the most important developments. I’m excited to hear all about all of your new developments, processing, perspectives too. 

And now I’m gonna go to bed. One nap today was NOT enough to recover from  goddess-knows-how-long-I’ve-had-this chronic fatigue. I’ll talk to you soon

I love you, Άδης

Your Εκάτε <3