lyreleafblog

[lyreleafblog]

A Personal Account of OCD and Hoarding Behaviors

Hi! I have OCD, and not the fun kind! Let’s talk about my experience with hoarding behaviors. Hoarding runs in my family and I’ve had two living relatives who very clearly struggled with the compulsion to continue bringing stuff into their homes without removing any of their old stuff. My experience has never made it far enough for my collections to, in any meaningful way, impair or otherwise affect my living space— but I’ve felt the obsessive need to collect since my earliest childhood memories. With many professionals agreeing that hoarding behaviors can be linked to OCD, I wanted to share my experience with this vastly under-discussed presentation of symptoms.

My hoarding behaviors began in very early childhood, when financial scarcity set in after a divorce. I won’t call this “true hoarding” though because by most accounts it’s more of a obsessive collecting behavior due to how organized I have always been with my objects. But I had a drawer of shiny objects. I know, shut up, yes I have fucking autism now leave me alone on that. This is about hoarding. My shiny object drawer was definitely a fun box of stimming for me, and I would open it and just scratch my brain itches with the glitters and sparkles and shines of all the stuff I had. No object was disallowed from this drawer— if it made my brain feel good, it was going in the drawer.

Some of the things I collected in there included:

Stickers

Sea Glass

Any piece of paper that was shiny or glittery

Shiny or sparkly wrappers

Polly Pocket or Barbie clothes (again, ONLY shiny or sparkly ones)

Tubes of glitter either discovered or outright stolen for the box

Most importantly of all, I collected innumerable numbers of rocks.

Thankfully, my grandpa eventually convinced me to store my rocks properly, wrapped in papers and in organized boxes.

Eventually my drawer was emptied when I moved homes during a chaotic time in my life. I was living with someone else at that point so I didn’t have any besides a bag or two worth of my old possessions. I also didn’t have that much of my own space so I couldn’t collect things elsewhere.

As a young teen, I realized that I didn’t like having a ton of stuff, but I did like having access to tons of stuff. Once I had my own bedroom and a stable living situation again by 14ish, I designed areas to hoard art supplies and paper craft supplies. Admittedly, while I call this hoarding, in reality I was super crafty and always cutting and pasting and drawing, so it was more of a stash than a hoard and I did regularly go through and look at, cut up and use the materials I saved.

To this day, I have one such box, as I love making mixed media art, especially out of pieces of things pertaining to the subject. For example, I did a marker and water drawing of one of the Florida springs that included a thread of a braided bracelet I had worn there. Today, however, my box is very strictly regulated, and only highly specific trinkets or pieces end up inside of it— and, it’s all kept alongside my normal art supplies so that it’s never mistaken as junk.

Around the same time is when I took up a new way of hoarding— a way that didn’t feel suffocating and didn’t, in any way affect my surroundings— digital hoarding!

I would say my collection of Sims custom content counts… but then again, “CC shopping” was a normal activity of players at the time and many players bragged about their massive hoards of downloads.

But there was something else that caught my attention eventually. I got into digital art. I have hand coordination problems and at the time was friends with people who didn’t, so I felt very isolated from a lot of traditional art communities since conforming to conventional methodology is genuinely impossible for me. Even digital art was hard… but my laptop pad was, while a massive frustration to artists who *can* use their hands, a viable tool for me. Eventually, I became able to do pixel art. I even eventually made pixel animations!

But then… the pixel collection folder began evolving.

A little innocent looking file on my desktop that said “Pixels” —

You could click it and a window would open with two more files listed:

My pixels

Not my pixels

“My pixels” contained, you guessed it, pixel art that I made myself. It was very often just pretty ladies or food. In fact, now that I’m thinking about it, it may have been entirely pretty ladies and food. But I did make sure to section each type of food and each type of pretty lady into even more categories.

Then, there was the unforgiving behemoth of my “Not my pixels” folder. I would spend hours scowling the internet for pixel freebies.

If you’re weren’t chronically online at that age, allow me to enlighten you. For no clear reason, in the mid 2000’s and early 2010’s, every game had a forum and every forum had an art shop section and every art shop section had threads that were entirely operated as pixel art shops. I traded gold, gems and whatever other virtual currencies I could earn for free for pixels, and made pixels for others, too.

The best part about the pixel art shops were that they all had a list of freebies.

Ten pixel bobas, each a different color

Or perhaps it was pixel bagel sandwiches— a selection

Pixel cakes were always my favorite

Pixel objects were also a favorite— pixel cellphones and computers and other toys all on transparent backgrounds.

I took them all.

Years passed but my pixel hoarding persisted. At one point, the files were so overwhelmed with the photos that I would save dozens of at a time that my computer struggled to open it.

Then, my laptop broke, destroying my pixel empire. I ended up unable to salvage any files. They were all permanently gone.

After that experience I was slightly disappointed upon realizing the overwhelming amount of labor restoring my collection would take. I was also gobsmacked realizing the hundreds of hours I had spent achieving nothing other than a collection of low resolution images of food. I decided it was probably best to leave that little.. hobby.. in the past.

As I’ve gotten older, I’ve kept a tight lock on how much stuff I have both virtually and in real life, mostly because I’m not willing to pay for storage on both accounts. But from time to time, I catch myself holding something shiny and wishing I could stuff it in my pocket and keep it forever. Or, I’ll run into pixel art in the wild, and have to remind myself that it’s not worth starting up again.

While I don’t “hoard” anymore, I do think I still have a unique relationship with “stuff” in that I explode if I see something go to waste, especially textiles or technology. I will keep objects until I have a convenient way to donate them en masse. I don’t like to destroy even the cheapest of furniture, I’d rather preserve it even if it’s flimsy, and give it to someone who might need something temporary.

I struggle to differentiate values like environmentalism, the will to circulate goods as a way of practicing mutual aid and combating poverty, and a rightful scarcity-mindset from what might be the same pure compulsions I had as a child. Is it /really/ about giving something away, or is it about ensuring that these generally worthless objects I’ve deemed value are are cared for? Is it about practicality or obsession?

Since it doesn’t really affect my life in any meaningful way now, it’s not a cause of stress, just reflection. I think it’s critical to generate reflective dialogues about these more taboo aspects of common mental and physical conditions and neurodivergences so that, together, we can create a more educated and accommodated world.

[lyreleafblog]

Does Chuckie Finster have Ehlers Danlos Syndrome?

Throughout human history, folks have made and observed media. It started out with paintings, literature, symphonies and plays that often served as a once-in-a-lifetime chance to experience creative mastery. Not everyone was able to access the elite-labeled venues and environments facilitating much of history’s most notable media events, but that didn’t stop average folk from making bard noise and creative messes however they pleased and wanted. Plenty of history’s greatest artists could hardly afford their tools, let alone an education that complied with the standards of both art and technology in their respective eras. As the world grew and globalization brought diverse stories together, the industrial revolution re-invented media (and all of art.) Media became not only accessible to the average individual, but completely necessary for a more civilized life.

As media grew and evolved alongside the new, cheaper, and often superior-quality technologies used to produce it, culture began to shift around everything from architecture to theater. Even the newer kinds of art like photography and cinema were compared and juxtaposed with other works so audiences could form common opinions about the evolving aesthetic criteria. Grainy photographs of the 1800’s rapidly evolved into still grainy but poetic motion features that gripped the hearts and challenged the views of viewers. Media became a more profitable industry than ever before.

The pace of consumption only increased more with time. Still, systemic barriers were erected with the intention of limiting certain perspectives from leeching out from media and into the masses. One of the most notable barriers was the censorship enforced by the Hays Code. The Hays code, which insisted upon the portrayal of white Christian (and especially Catholic) values, vastly limited the visibility of anyone deemed a deviant to its causes. The Hays code went into full affect in 1934, just two years after the premiere of Freaks—a renowned film that elicited viewer empathy for some of the most ostracized and neglected groups in society.

The United States’ Hays code was eventually replaced and critical media barriers were finally breeched around the civil rights era. Underrepresented perspectives had their very first shots at participating in the media conversation. There was no guarantee of equality in the quality or frequency of representation for these groups in the media, but the little participation these communities were allowed resulted in unconfounded, permanent influence. Homosexuals, minority ethnic groups and disabled individuals were (very) slowly beginning to earn rights and were somewhat allowed to assimilate into society. This coincided with the Ugly Laws coming to an end in 1974 and disability representation forever changing. Not even a full generation prior, people who lived with these “disabled” labels thought any degree of integration was impossible. Becoming “the one that made it out,” perhaps by running away with the circus, for example, was often people’s only real motivation.

The setting of a circus is integral to a conversation about whether famous Rugrats character, Chuckie Finster, might have an underlying congenital condition or not. Chuckie might be a baby, but first and foremost, he’s a scaredy-cat, a nerd with big, square glasses, riddled with a variety of tease-worthy medical problems—and there’s a place where outcasts like him can make a living not dissimilar to the side-kick life that Rugrats and All Grown Up! have in store for little Chuckie. The circus doesn’t discriminate in terms of who it’s willing to exploit for some cash. It made the perfect environment for the story of the iconic 1932 film Freaks.

Revolutionary for it’s time and our own, Freaks employed actors with overt disabilities who appeared alongside able-bodied co-actors, some of whom apparently reported feeling discomfort at the sight of these different-looking individuals. The film received all kinds of reviews from audiences and has been banned in many countries due to its controversial takes. While the story of Freaks is ultimately humanizing, the film doesn’t hold back on portraying the viciousness and violence of ableism. Freaks did what no great or notorious piece of media since has accomplished by attempting to sincerely express a story about how nondisabled people can abuse disabled people. The carnival-esque background brings the masterpiece together in an unignorable, realistic fashion, ensuring that the film’s message will leave a mark on anyone who watches.

Recalling the circus theme in media is especially important to the consideration that Chuckie Finster might not be able-bodied and neurotypical because it provides a context through which “normal” or nondisabled individuals view people born with conditions or traits that visibly stand out from what is expected. For a long time, individuals with such divergences were, at best, relegated to a life of performance (or service, but that’s another subject), often at the sake of their mental and physical wellbeing, or risk a much faster demise through poverty and sickness.  It is within these arenas of performance that the modern social perception of disabilities and divergences as a distinct social group began to form. Alongside the flamboyant and feminine looking gymnastics performed by hyper-flexible circus contortionists and acrobats delicately flying overhead were the live-animal-head-eating and intellectually impaired mutants wandering fairgrounds in hopes of being gawked at. The most offensive of these labeled “freaks” can be concluded in one colloquial word:

Geek.

Geeks are freaks who perform their freakishness. They don’t die in mysterious circumstances, or in sanatoriums. They might die doing tricks. Geeks are at least better, more familiar freaks who make themselves useful. They get-on, somewhat like moral, working men and women, which makes them stimulating to conventional, conservative values, which makes them “good” for entertainment, or at least “better” than those freaks who lay down until they die young or cause trouble.

The Hays code and surrounding influences dampened the presence of virtually any voice that wasn’t pro-straight-white-able-bodied-Christian-men-who-follow-the-law. Characters with disabilities, or who were queer coded, were written as props, villains, and monsters—despite that many families housed disabled and otherwise impaired or disfigured individuals. Americans hungered for foreign films that told realistic, meaningful stories they actually could relate to. Neither the graceful acrobats, men donning tight, colorful costumes who would glide through the air, nor the set of conjoined twins sat on a stage for observation, or anyone deemed divergent for any reason didn’t receive a happy ending in American media. Their lives and stories existed merely for voyeuristic pleasure.

By the time the 1970’s rolled around, a massive cultural shift, especially pertaining to media, was long  underway. The Hays code was replaced by the MPAA and film and media creators finally felt a sense of liberation from the conservative extremes preserved by the prior censorship system. Still, media creators were slow and infrequent in their attempts to deviate from normalized stereotypes when portraying queer or disabled communities. One of the most popular (possibly because it was one of the only and most accessible) media franchises of the era was a television show known as Happy Days, which at times, centered the plot around these stereotypes.

Happy Days is often credited as inventing the first example of what we might call the “nerd” archetype in cinema. The show thrived on a storyline that involved juxtaposing a tough-guy greaser character, Fonzie, with the rest of the main cast, a bunch of wholesome-as-whole-milk boys who were distinctly not wearing cool leather jackets. The character Potsie is probably Fonzie’s greatest foil. Rather than seeming calculating and in-charge, Potsie is submissive, a little bit slow and socially hopeless. At times, he’s played for laughs when finding himself in ironically homosexual-esque situations. He also doesn’t seem to be especially valued to people close to him, as his parents happily pack his bags for him and send him away when he suggests leaving home. 

Potsie’s conversational ineptitude results in the characters repeatedly stating, “You’re such a Potsie!” It becomes a catchphrase. He takes things literally, is uncontrollably honest, and is seldom aware of when he is offending or upsetting someone around him. Despite this, he seems to always have good intentions and is happy to participate in the group. Potsie might be better than some at masking, but he possesses some unsettlingly identifiable qualities. Potsie is a “freak” just like the character Hans from the aforementioned Freaks. Hans might have been physically disabled due to his stature, and ridiculed openly for that by many around him, but both he and Potsie were ridiculed for their perceived social ineptness. Han’s social ineptness is arguably the point of the plot of the film Freaks where he is convinced that a woman who regularly bullies him has actually fallen in love with him—in reality, she simply had learned of his inheritance, and had malevolent intentions. Like Potsie, Hans has a meaningful and robust story that calls for empathy from the audience. The biggest difference between the characters was that the character of Hans was born from a pre-code cinematic perspective, while Potsie is a visually sanitized, far more digestible archetype. Hans is a freak among freaks and geeks—but Potsie is the geek in his show. His character became one of the first profitable examples of post-code cinema presenting divergent behaviors or individuals in a non-villainous fashion.

Potsie’s conception opened the door for a somehow still-withstanding characterization of a “nerd.” More importantly, he reinforced the role of cringy comic relief through secondhand embarrassment, eliciting a feeling of internal grossness from the audience, or nearly slapstick humor, almost like the role of the historic geek, to a mainstream audience. He is so interestingly “gross” to observe that he quenches the curiosities of those who aren’t like him. After his creation, regulatory groups and audiences had been presented with an image of divergence that only furthered the ego of the able-bodied, cisgendered and heterosexual default American citizen. Socially-aware representation, like that of many of the other silenced perspectives only barely able to make themselves known during the 1970’s renaissance of film, was poor, ill-informed, and sometimes came at the cost of extraordinary exploitation.

Once Potsie broke barriers by making the traits of many disabilities (Such as ADHD, ASD, intellectual and learning disabilities) look potentially profitable to major media producers, and for reasons so wrong and immoral that it makes the very act of representation seem pearl-clutching controversial, the conceptual, cultural archetype of the nerd became more visually divergent. Soon, media started to showcase a kind of warped-representation of people with even more-visible disabilities. One of the most ubiquitous examples of a more modern “knurd” (the 1960’s and 70’s spelling for what we now consider “nerd,” and which is simply “drunk” spelled backwards, referencing sobriety) is the character of Steve Urkel.

Urkel’s image marks the intersection between the first iterations of a more sanitized “nerd” with the original, and far uglier, “geek” or “freak” context of the concept’s origins. The first thing one might notice about this unforgettable character is his pair of comically oversized glasses. In the United States, poor vision can contribute to an individual winning disability benefits even if they aren’t completely blind. It’s a long shot to say that any kid with glasses must be utterly debilitated by some kind of physiological anomaly, but that is by no means Urkel’s biggest problem in the show. Other of his characteristics point to the likelihood that his ocular impairments are comorbid to some kind of whole-mind-and-body phenomenon. Like with Potsie, Urkel’s biggest hurdle in any plot tends to be his own social ineptness or even overt awkwardness. Urkel appears to have some social or communicative problems, co-occurring vision problems at a young age, and pronounced academic intelligence. To put it bluntly; Steve Urkel might be the original, modern, quirky-divergent cliche in American media. The only thing he’s missing is Sheldon Cooper’s stereotypically monotonous tone.

Just months after Steve Urkel, the bio-boy blueprint for a welcomed freak, hit the little screen, The Simpsons was born and so was the girl-version of the media’s favorite sideshow character. The only problems in Lisa Simpson’s life are social or a result of her black-and-white perspectives on justice. She is simply, and always, regarded as being more sensitive, or perhaps too sensitive, to things that those around her don’t even consider. She is empathetic, organized, anxious, and proficient, but is doomed to be infinitely misunderstood by every force around her. Despite this, because of how productive and practical she is, she receives praise and a watered-down form of acceptance among her family and loved ones. Her character is too young (and female) for writers to have explored more of a visual representation of her “nerdiness” or her “freak” nature—a painfully ironic sentiment considering the vast rates of underdiagnosis and late diagnosis in neurodivergent women who probably grew up admiring the otherness of Lisa Simpson. How begrudgingly realistic for a cartoon with star-shaped hair and school-bus skin.

But this isn’t about Potsie, Steve or Lisa. This is about Chuckie Finster, the Rugrats baby who always has untied shoes, messy hair, a spotted face, a runny nose, glasses and unparalleled levels of pediatric anxiety. Oh, and he also has his conveniently dead mom. Chuck Finster’s archetype was ubiquitous before he even saw the screen. He was the baby-nerd—and boy, was he loved for it. Without anyone having to worry about what would one day become awkward if not overtly inappropriate socialization and the fallout of his legitimate weakness towards peer manipulation, Chuckie was the perfect package of normalization. He was a born-to-be sidekick. He was a baby with visual impairments and a constant sense of fear and nervousness. And let’s not forget the dead mom—who specifically died from an illness, because of course she did—healthy, neurotypical parents don’t have high odds of producing kids like Chuckie, as many of his traits are usually hereditary. We can clearly see that Chuckie inherited at least some of his traits from his father, but his mother’s early demise is seriously suspicious in pointing to this baby has the genetics for a serious congenital problem.

Everything from an often-greater sense of reasoning to the fact that this infant is recorded as having autoimmune psoriasis (a serious and at times debilitating chronic illness where the immune system attacks skin) makes him a perfect little sideshow-sidekick and voyeuristic freak. Chuckie is a punching bag for jokes, but he’s just happy to be there. Afterall, if he’d been born with some other kind of divergence besides Quirky-Nervous-Smart-Sniffle-Skin-Syndrome, he could end up just like Hans, or worse—institutionalized.

Following that thought for a moment, attention reverts to the masterpiece that is 1932’s Freaks. Moreover, an explanation to the sick-baby-sidekick that is Chuckie Finster might lie in one of the most popular political ideas at the time of its production, eugenics. From “Better-Baby Contests” to forced sterilization, particularly among institutionalized women, the 1930’s were a pinnacle of worldwide Eugenics philosophy. The subject was not taboo but was mainstream and even taught in universities.

What would come in the late 1930’s and especially the early to mid 1940’s would have a permanent effect on the representation of people with disabilities. This trend might be even more influential in today’s pseudo-representation than the hallmark of the Hays Code that closely preceded WWII. The fear of institutionalization was a terrifying and very real horror. Anxiety over discovery of a potential congenital fault—anything from racial background to mental and physical disabilities—silenced massive communities and deafened the public world to their issues. Ironically, Franklin D. Roosevelt became the first definitely-physically-disabled president of the United States (there is some consideration that other presidents successfully concealed their significant disabilities throughout their times in office) during a pinnacle of anti-disability philosophy. His presidency began in 1933 and lasted through the Holocaust. Notably, however, Roosevelt’s disability was acquired, exempting him from the genetic scrutiny that people living in similar bodies broadly suffered and died under. He worked very hard to hide his disability throughout his time in office, facing similar, but much less severe, social pressure to those born with their impairments.

(In many areas of the world, Eugenics went on for far longer than most people realize. It continues to be practiced both overtly and covertly to this day. I wanted to note these heartbreaking reference from the Wikipedia article on Eugenics that I reference here—

“Between the span of the 1930s to the 1970s, nearly one-third of the female population in Puerto Rico was sterilized; at the time, this was the highest rate of sterilization in the world.” “An estimated 40% of Native American women (60,000–70,000 women) and 10% of Native American men in the United States underwent sterilization in the 1970s.” Another community that faces what can be considered ongoing eugenics-based oppression are black Americans who face deadly discrepancies in healthcare outcomes and are often ridiculed with incorrect, but widely pathologized stereotypes. There are plenty of people walking around the world today, probably not far from you, wherever you are, if you aren’t one of them yourself, who have been directly impacted by forced sterilization or similar programs.)

There were many reasons why someone who, for all intents and purposes can be regarded as disabled, would want to downplay or conceal the severity of their impairments. Brutal institutions, literal death camps, total social rejection, forced sterilization—and these are ongoing, global risks that occur on both systemic levels (like China’s systemic genocide of the Uyghur population) and on more personal levels, such as the “mercy killings” that occur apparently once a week according to the Ruderman Family Foundation.

It's no wonder that we are living in times where generational, world-wide trauma has resulted in an overwhelming tendency to conceal, deny and downplay the congenital traits that society does not accept. Many cultures suffered directly or indirectly from the result of being labeled as anything other than normal and perfect in racist, ableist, or homophobic political environments. Consequently, society has found a cultural middle ground through which it can perceive certain qualifying disabilities and divergences.

(No, you will never be the main character. You’ll never win the love interest—or if you do, it will be out of canonic pity. You’ll never be conventionally attractive. You wouldn’t even want to be the center of attention—you’d freak out, because you’re not the brave one. You’re the voice of caution when everyone isn’t laughing at whatever you’ve said.  If you’re lucky, you might end up intelligent but misunderstood—especially if you’re a girl. Or perhaps you’ll just be another airhead. If you’re a boy, you’ll never be more than the awkward sidekick, the sideshow for comic relief. It’s not a bad deal for generations of people who have been systemically brainwashed to hide their disabilities at any cost. Sure, you’ll never win their acceptance… but at least you can make some kind of living as a performer.)

History persists. While the technology and aesthetics around the modern world of media adapt with each innovation, certain trends continue to influence the way that people communicate and interact with media about disability and disabled people themselves. Often, the same message is carried out time after time, referenced and with homage paid to it. For some concepts, like that of the sanitized geek, it’s like a game of telephone. The original message gets scrambled more and more with each retelling. Eventually, it might just blend into noise.

The Big Bang Theory is about a bunch of nerds and the resident Hot Blonde Chick who socially adopts them. Every male character in the show is presented as if they have serious social impairments. They struggle to be taken seriously at work, by women, and at times, even by one another because they are all constantly at odds with their masculinity thanks to their shared label-- they’re all geeks. Worse off, The Big Bang Theory creators deny that their characters are divergent, claiming a desire to avoid pathologizing them. It’s an ironic sentiment considering that every episode seems centered around a plot surrounding one person or another’s social or executive ineptness. Some people argue that the show goes as far as to exploit stereotypes about neurodivergent people (and this is a reminder that legally, many conditions that are described as neruodivergences are considered disabilities) without even attempting to serve as representation for them. All potential humanization is lost when characters are forbidden from openly taking part in and accepting their communities of origin.

The history of geeks, freaks and nerds in media signals that divergent individuals will persist through any culture or environment. Such is the foundation of the “neurodiversity movement,” which realizes the idea that the long history of these conditions running in families, combined with their de novo presence, comes from the same manifestation of evolution as commonly expected behaviors and traits. While the masses openly debate about whether or not such divergences are the result of evolution or the corruption of evolution, individuals labeled as different by these conventions have struggled against a world that refuses to either acknowledge or understand them. History’s and today’s media both illustrate and reinforce the othering of so-labeled divergent or different individuals in complex and nuanced ways, like through the geek trope. The way modern geek-trope characters never seem to receive an explanation for their difference mirrors a grim and dangerous reality.

When people who can relate to these characters grow up seeing self-representation in archetypes whose only hopes to integrate lay in trading out their dignity, sincerity and self-awareness, these individuals begin to trade out their own real-life pride and ego to attain trivial acceptance from peers who cannot understand them. They are kept ignorant of the tools and resources that might mitigate their struggles in exchange for receiving social head-pats for being entertainingly weird or awkward. Rather than this representation fueling acceptance, it does the opposite—it encourages and justifies the role of ridicule.

One might find themselves wondering what can be done about this overarching situation. The answer might be simpler than it seems. Rather than aiming to smash down the controlling pillars of authority ultimately behind this operation, another way that audiences can challenge the status-quo is by participating in dialogue about media. When individuals compare themselves to characters and share their ideas about stories, everyone is able to better connect reality back to art. Perhaps the acknowledgement of the system’s history will provide fertile ground in which conversations can sow ideas that will one day grow into new cultural norms. Afterall, there was a point in time not long ago where people like Hans, Potsie, Urkel, Lisa and Chuckie might have not been allowed in public spaces on a bad day. Now, they are archetypes who silently reflect an underrepresented struggle that people with divergences and disabilities face daily in their real world lives—even through the implied normalization of these character’s physical and social tribulations.  The policies and economics that have forever framed the average relationship to and with media are impossible to un-do, but through unbiased dialogue and self-expression, perhaps more dignified, sincere representation lays ahead.

Informal References:

Code of The Freaks:

Code of the Freaks

Disability History:

Inclusive Heritage

Ugly Laws:

Ugly Laws

Freaks:

Freaks (1932)

Eugenics:

List of Eugenicists

NCBI

Eugenics in the USA

Mercy Killings:

Ruderman Foundation

Carnival Geek References:

Encyclopedia

TV Tropes

TV Tropes

Geek / Nerd:

Geek Vs Nerd.

History of Nerds.

Britannica

TV Tropes

Nerdistic Park.

Chuckie Finster:

Fandom

Youtube 

[lyreleafblog]

Life Post Excision (A Poem For My Husband)

Won’t you 

Ravage me

Savage thing 

Lust with a matching ring 

Bedroom squared circle ring 

Savagery, blasphemy 

Oh my God, fuck me please 

Worship you from my knees 

Sinful idolatry

Heaven will punish me 

[lyreleafblog]

little lords of the flies

little lords of the flies

innocence in their eyes

until a boy gets wise

he decides to incise

precision civilized

can you see it in his eyes

they agree to compromise

they agree that they’re allies

don’t ask him, he will lie

he can’t help but deny

the struggle of mankind

it will leave him behind

[lyreleafblog]

Resources For People in Need

This post will be updated as more resources are categorized and organized.

 Unspecified US Resources:

The National Runaway Safeline (Resources for runaway youth and hotline)

 https://www.needhelppayingbills.com/ (great resources about all kinds of things)

https://www.mutualaidhub.org/ (mutual aid)

 SLIDING SCALE / LOW COST PSYCHOLOGICAL CARE

 https://www.inclusivetherapists.com/ (be sure to use the search bar on the home screen to set your search settings to show you sliding scale services)

 Birth Control / Reproductive Health Resources (US)

 *Birth Control Delivery:*

 PrjktRuby

https://www.prjktruby.com/category/oral-contraception/?gclid=CjwKCAjw0ZiiBhBKEiwA4PT9zyY2zFMOOHnhu1lV2-UyFbNJ8vixgSsIMCt4v5jNDB1NrkM1RQ25oRoCoa0QAvD_BwE (birth control delivery)

 Nurx

https://www.nurx.com/birthcontrol/?g_adtype=search&utm_campaign=Brand_Nurx_Exact_BS_NURX&utm_content=brand&utm_medium=cpc&utm_source=google&utm_term=nurx%20birth%20control&g_acctid=687-940-1110&g_campaign=Brand_Nurx_Exact_Exposed_BS_NURX%20_Pixis&g_campaignid=19831159597&g_adgroupid=146624942586&g_adid=616854764578&g_keyword=nurx%20birth%20control&g_keywordid=kwd-427936218386&g_network=g&gclid=CjwKCAjw0ZiiBhBKEiwA4PT9z0Sf1Huz6Af-XRUMYxne6KOrhWFV-_pQbPmupO4P-SGJyPD6U2GyrBoCt7QQAvD_BwE (birth control / morning after pill delivery and fairly comprehensive multifaceted healthcare—no specialization)

 *Family Planning Health:*

 Plan C Pills

https://www.plancpills.org/ (how to acquire)

Nurx

https://www.nurx.com/emergencycontraception/ (emergency contraception delivery)

Planned Parenthood

https://www.plannedparenthood.org/ (many healthcare services)

 Resources for FL Residents

Trans Mutual Aid

https://www.transinclusivegroup.org/transinclusive-emergency-crisis-fund-mutual-aid/#:~:text=To%20help%20address%20the%20critical,the%20height%20of%20COVID%2D19. (Pardon this link I’m on mobile— this serves Dade, Broward and Palm Beach)

 Women, Infants, and Children (WIC):

https://www.floridahealth.gov/programs-and-services/wic/links.html

Pregnant and breastfeeding women, women who have recently been pregnant, infants, and children under the age of 5 years who have a low or moderate income, are at nutrition risk, and who live in Florida. A person is considered income-eligible for WIC if the household income is less than or equal to those listed in the WIC Income Guidelines or if the person is currently receiving Medicaid, Temporary Cash Assistance (TCA), or Food Assistance. However, a person does not have to be on a public assistance program to qualify for WIC. To view the WIC Income Guidelines, click here.

 Free and Low-Cost Health Care Miami-Dade County (MDC)

https://www.floridahealthjustice.org/miami-dade-county-free-and-low-cost-health-care.html

 Low-Income Home Energy Assistance Program

https://www.floridajobs.org/community-planning-and-development/community-services/low-income-home-energy-assistance-program

 Breast and Cervical Cancer Early Detection Program

https://www.floridahealth.gov/diseases-and-conditions/cancer/breast-cancer/bccedp.html

 TSA / OTHER

https://www.floridahealth.gov/programs-and-services/wic/links.html

 South Florida Mutual Aid Coalition

https://southflmutualaid.org/ (serves Ft-Lauderdale-Miami Metropolitan Area)

 Going Places Street Outreach

https://www.ccys.org/programs-at-a-glance/going-places-outreach/ (Tallahassee—removing youth from the street, unstable conditions, aiding runaway youth)

 Florida Free Legal Answers

https://florida.freelegalanswers.org/

[lyreleafblog]

☽ Crystal Magic Table of Contents ☾

 ☽ Part One ☾

☽ Part Two ☾

☽ Part Three ☾

[lyreleafblog]

☽ Crystal Magic / Part Three ☾

I explored and discovered a myriad of concepts all stemming from powerful anecdotes. Jeannie Di Bon offers much information. Nikki has become a personal inspiration to me, especially with how she discusses more social elements of fitness and how they discourage hypermobile individuals and hinder our success. Dr. Jen Crane expresses a lived reality that juxtaposes the very treatment guidelines I was initially given regarding Ehlers Danlos and hypermobility.

Holy shit. My dead mother left me to inherit her disease without a single cue of guidance, nearly a thousand miles away from the genetic blood that looked and lived like she and I alone did. Suddenly, every time I unlocked my phone, I was faced with images of people who looked like me and who hurt like me and who, like me were discovering and sharing about the relief that exercise can bring to individuals with hypermobile conditions. My mom had, in her best mindset, at times in my childhood, told me stories about how when she lifted weights, she was the healthiest she’d ever been—folly, dreaming up a fantasy of doing it all over again, and imagining, maybe hopelessly, but maybe almost in genius, that weights were the real cure all along.

I took off. I’d already known a bit about fitness thanks to childhood interests and pursuits. A more psychologically sound understanding of how to appropriately maintain my intake and body image allowed me to properly nourish myself. I gained strength rapidly. Occasional classes, many work-books and an exercise mat, resistance bands, free-weights and even sometimes going to a real-life -gym—it all became just another part of my routine.

I became stronger than I could ever remember being. I became profoundly more able-bodied than I’d been in years. I walked at a theme park—and rode roller coasters—and felt good.

And then, something sinister started cooking. Finally, the last piece of the equation shuffled out from behind a curtain, and I was faced with the finale of my psycho-spiritual-medical-crisis.

In late 2022 I caught coronavirus despite being fully vaccinated. I’ve read that those of us who had an allergic reaction to the vaccines might be more prone to actual infection should the vaccines efficacy be reduced. Either way, I caught it. Miraculously, my usually-life-threatening asthma didn’t seem to flare up nearly as much as another part of my body—a part I had long thought I was quite literally divinely intimate with: my nerves.

It started with intense cold flashes and sweats. I don’t remember much besides the misery of those sensations. I recovered from Covid relatively quickly, so I thought I’d gotten away without incident. As the months past my recovery began to add up, however, I found myself facing a whole new set of symptoms. When the holidays rolled around, my partner helped me piece together that these symptoms were not, in fact, new, but instead were just now very pronounced.

Irritiability, severe insomnia, sleep disturbances, visual hallucinations and convulsions began dominating a week out of every month of my life. It quickly became so disorganizing that I found myself unable to keep up with my diet or exercising as neatly as my health generally required—which I’m certain only worsened things. I didn’t understand it—not at all—and moaned to my therapist about how my rising symptoms simply didn’t make sense.

I’m not ready to address most of what happened next because as it continues to unfold, I still struggle to process it all. What I will say, however, was that my small family was hit with a sobering realization. For a lifetime, I’d been excused away with “mental illness” as many women and people assigned female at birth are. “It’s just anxiety,” they’d say. We discovered something I never could have imagined, thanks to my background; Anxiety isn’t always the cause of something—sometimes, anxiety is a symptom.

And sometimes, meditation isn’t the most reliable treatment, despite its accessibility.

My new understanding might be new, in fact, but I’m told that everything about me has been present from the start, and instead, it’s merely the environment I interacted with that has both emboldened and extinguished various aspects of my DNA. Perhaps, with a stronger, less wobbly neck, I would have a condition with a different name, or have no condition at all. Perhaps if I’d grown up never meditating or playing videogames or sitting much too close to the tv screen or listening to binaural beats very loudly in the attempt to depersonalize from my period cramps, perhaps things would be different. Instead, this is my reality.

Something big awoke in me. It coincided with meeting a friend who herself was so fully invested in the realm of spirituality that she seemed to pull it out of whatever metaphysical box-in-the-closet I’d yet again returned it all to within myself. My crystal garden made it’s way out into the living room. White candles appeared. A pendulum gently rests on a glass end table, reflecting the image of its own crystalline structure, looking four-dimensional.  

If this entire time the very labels of my conditions were little more than unmedicated symptoms, then what else do I have to trust but that intuition that I have found for myself, by myself, and within myself, which I can carry with me everywhere?

I always knew it was real. It wasn’t the presence of ghosts, nor a sensation generated by my psychology—though certainly worsened by its illness.

My own anxiety is a symptom, an aura. My suicidality is nothing more than a temporary, illegitimate side effect. That’s why no amount of cognitive reasoning has ever touched it. It’s not a thing that exists in the realm of reason, but an impulse that exists in the same way of my need for vestibular stimulation during a temper tantrum.

These feelings are not the problem—they’re a cue that the problem is acting up again. Just like the kaleidoscope headaches. Just like the shaking in bed at night.

“Catamenial,” they go on, charting in their little documents. Treatment-resistant. More cancer-causing-hormone-pills, less kundalini-breathing.

No. No, to put it simply. No longer are my experiences merely a collection of human behaviors meant to be labeled and categorized so that I might slip through every possible crack in the system for decades like my mother had. When I learned that my anxiety itself was merely a symptom of something else that was happening inside of my brain—something that apparently, is mostly influenced by the level of estrogen circulating in my body—I felt like the world as I knew it had ended. I know, PMDD, etc., all of these other catch-all labels exist to describe what I suppose one could call hormone-related-mood-changes—but to describe this phenomenon as PMDD, an arm-chair descriptor that people are nearly encouraged to self-diagnose with, would be like describing the alphabet without phonetics. Why PMDD?

Why are the symptoms happening—not “what are they”, and “how can we put a band aid over them and ignore them until whatever underlying condition initially caused them spirals out of control, spills all over the floor and makes a big mess everywhere?”

What mechanisms in the brain are genuinely responsible for the experiences of a patient? Through the lens of psychology, despite the field vocally recommending away from Freudian roots, one human being can quite literally observe—as in, using only their core senses, and making only direct notations—the deeply rooted, totally invisible, mysterious, largely inexplicable interpersonal workings of another human’s brain. Sure, the anecdotal, self-reported status of patients improve alongside the treatment of these “immaterial” symptoms. I told myself I had PMDD, and my childhood counselor agreed with me, and my “treatment” of sticky-notes telling me I’m pretty on the mirror seemed to help. Yet it hadn’t, but to fulfill the social role of psychiatric illness, I told myself, my doctor and everyone else that it did. Meanwhile, the twisted neurological and endocrinological concoction that was actually behind my conditions, one that influenced every single fathomable aspect of my perception, decision-making, executive function and socialization continued to devolve.

It's so easy for this timeline to occur with any condition where physical proof of its very existence is lacking. I don’t mean to discredit the studies of “depressed brains” and such, which of course really do convey meaningful data, but to simply call into question the expediated pace at which someone with profound medical abnormalities might somehow find themselves rapidly re-focused on coping with their deterioration rather than taking accountability to prevent it. Why was my condition labeled as “PMDD” before a single EEG was ever done on me? I’ll answer that—because the psychologist who told me I had PMDD didn’t need to run an EEG for the insurance to pay her for my continued sessions. I don’t blame her, or any psychologist who are part of the many that I believe to be overly diagnosing mental illnesses that might be side effects of untreated physical illnesses—especially in areas where healthcare access is strained. We all just want to feel better and help each other feel better… But at some point, we must take responsibility for the enterprises we subscribe to without protest. Those enterprises may be of science or of religiosity—but in this specific example, in this chapter of my personal story—the scientific truth was delivered to me through a god-fearing scientist. How ironic.

Oh, the book of shadows—the pretty little labeled jars of quartz and things that are just quartz but with pigment, and other, actually precious stones—and the white candles laced with jasmine oil—they all found their ways right back, front-and-center in my home.  Feeling unsafe inside of one’s own mind is quite the experience. Pascal and his wager had nothing to do with it, this time, however. Instead, I was searching for a comfort that I realized no form of science could ever award me with.

At first, my neurology was all over the place, and everything felt spontaneous and pattern-less.  With the practice of my long-locked-away spiritual mindfulness, however, slowly, I have been becoming more able to recognize the semi-conscious patterns in my neurology that I’ve been mislabeling as anxiety for decades. When I meditate, I can feel my brain. I can pay attention to how it feels. I can notice little things. For most of my life, those little things were labeled as evil. Then, they were labeled as some kind of Munchausen or psychosis. Then, thanks to one single doctor, I came to learn that they were in fact my brain experiencing itself and trying to explain those experiences back to me. They are clues indeed, and those very clues will go on to help expert doctors find a long-term treatment for me that isn’t nearly as risky as some of the blanket-treatments for my conditions. Yes, to the experts, these phenomena are measurable and relatively simple to study. Perhaps not with Freudian psychotherapy—but with simple labs and imaging.

Alas, I am finally liberated to begin to take ownership of these experiences. Not a “mental illness” that I must constantly battle against to retain my artificial “I’m a good and normal person” token—not the spiritualist woo that I grew up on, balancing good versus evil—but simply put, biology. On the glass table where I’ve fabricated my little would-be alter, if I were a conventional, non-secular type, a slice of citrine glitters underneath my ceiling fan. It helps me relax during the meditative practices that have found their way back into my daily routine. Only because I, for myself, because of myself, and entirely by myself decided so—I uphold my practice. It makes me feel good, and I now know how integral and critical the sensation of “feeling good” is to my measurable neurological wellbeing. The “feel good” is the absence of severity in many of the neurological challenges I live with. It is not victim to the advice, wisdom, influence or even suggestion of others—not grifting diviners or established churches or stemming from even a single branch of modern medicine.

Instead, I am focused on the philosophy behind the creations of medicine and psychology themselves. 5,000 years ago, when humans were initially preserving information about mental and physical health, the concepts of medicine and psychology were often, if not always unified. A deviation point from this unified perspective, at least in Western thinking, might be, for example, Cartesian dualism. Contrastingly, however, certain concepts associated with early human medicine, often questioned as archaic or outdated, permeate into the everyday lives of many peoples.

Aspects of archaic medicinal cultures continue to suggest the applicability of such concepts through the day, such as in the still-popular techniques described in Ayurvedic medicine. In Ayurvedic medicine, the various more consumable treatments simultaneously affect physical and mental health. Some physical ailments are suggested to co-occur with mental ailments, or there is such a pattern where any one kind of patient complaint would immediately warrant investigation into the corresponding psychological or physiological complaints to those ascribed sorts of issues. I think this juxtaposes well against the western use of medicine that isolates and treats one specific problem, while describing the other, undesirable results of the treatment on other bodily systems, or on the mind, or on the body itself, depending on the treatments context, as simple, predictable side effects. Medicine has long had roots in a more epistemological, relational background, which many people find anecdotally superior to this day.

I, however, have realized, from this sort-of-bird’s-eye-view forcibly provided to me by chronic illness, that subscribing to any single body of thought, particularly any that is absolutist in its declaration, might be provably un-helpful. Once any concept, even a medical concept, becomes well-known enough, I believe it all becomes a bitter game of “telephone” between speakers and leaders and their audience. One can either go to heaven or to hell—one can choose to live the ultimate healthy lifestyle, or a savagely short one—one might be infinitely ethical or practically evil—black and white thinking frames the conversation. As the history, research and data is transcribed over and over across not only thousands of years but thousands of miles, too, observers can become empathetic toward the situation that has resulted in multigenerational agony in my family. Other people will find means to justify the acceptance or growth of the concept they defend. Yet it doesn’t take long for something with a tremendous capacity for healing to be turned into a way to blame an individual for their lack of medical treatment success, or the lack of success in other areas of their lives. Once a tool is being used to shame, limit or restrict other individuals, its capacity for harm has become apparent.

Am I a bad witch for being secular?

Am I bad depression-patient for turning to witchcraft?

A bad patient for not wanting pills?

Am I a bad person because I can’t eat only plants anymore?

Yes, and that is why all of those everyday-extremes warrant talking about. All of these communities might defame, exclude and otherwise seek to quiet my perspective because it breaks their systems of moral justification. Should I, even for a moment, humor any of these ethical extremes, I’ll find my fragile human brain thrown back into the make-believe cycle of spiritually condemning my sin-ridden, selfish-for-wanting-peace self to pain. Similarly, if I throw all of it away and rely on “conventions” to “make me feel better,” then I am simply crazy—as in, the only explanation for my ongoing dissatisfaction with either my state of being or the overt decay of our world—is that I must just be crazy… Until another genius comes around the corner with another test that nobody else had thought to run yet.

Now, this is where this article (err.. novelette) will become challenging as I attempt to convey my conclusion. I have personally concluded nothing besides liberty from this situation. I have come to the realization that the greatest source of “how I’m doing” quite really is myself. I can determine if a treatment, philosophy, or even a particular incident of practice is appropriate and dignifying for me. I don’t have to be vegan to eat fruit salad. I don’t have to believe in Aphrodite to practice witchcraft. I don’t have to take AEDs to control my seizures (at least yet). The liberty of removing myself from the constraints of hierarchical, social labels is unbridled.

So, my experiences have hopefully landed me enough perspective to guide other seekers into a path of their own conviction. I would recommend beginning to simply challenge or question some of the categories we have itemized our personhood into. Analyze the surrounding community of people in the group you’re reflecting on. Do those people live lives that you would like to have for yourself? Do they behave with traits that you want for yourself? Are they as authentic and genuine as you want to be? Rather than targeting an individual, identify more general sources of communication for these organizations or groups. It can be easy to fool ourselves with the help of a singular good-enough-looking role model.

I find it helpful to meditate on the color purple, the rock called amethyst, and other such subjects that express the bridging between what’s perceivable and what might be divine. If a placebo works, then it’s just as good as a drug. If a drug doesn’t work and makes you feel horrible, then regardless of what your blood tests say, is it really any better than just pretending you feel better? Humor my centering of dignity.

At the same time, one must be their own prescriber of placebos to avoid being conned into statistically supporting another capitalized ideology, which is certainly not easy. In a time where advertisements have slowly but surely replaced nearly all of the media we consume, it can be difficult to weave out what part of a persona is authentic—even within our own everyday friendships. Thus, like good little researchers, witches and scientists, we must explore, practice and test the concepts around us. Like in the way that we communicate with one another using words, pictures, gestures and metaphors—the physical world around us communicates back to us, not always in ways that appear quantified in lab work, and not always in ways that we might assume to be experiencing with our souls. Instead, we are left alone with our mindfulness and memories as our only real guides.

Faint words fall onto deaf ears in an audience of people I know are so much akin to me that I might as well be talking into a mirror. Perhaps I am, and I am okay with that. I am not rejecting either wellness or science, but rejecting the full-throttled trust and commitment to any pre-defined system, with or without checks and balances, because all of the logos and data and legends mean nothing next to ones active personhood. Do what feels genuinely, truly, authentically, and completely good.

Spend time with yourself. Check in with your body. Check in with your soul. Have a dialogue with your ethics. Acknowledge and engage with the thoughts in your head because, though it may feel otherwise, they are not happening to you—you are creating them. Justification is a psychological process that means nothing to much of the rest of the animal kingdom, who, thanks to a lack of Big Stupid Words like those I’m typing now, communicate with their natural world using only their most instinctive biology.

Your body is talking to you. Unlike you’ve been told, you might not have ever needed a translator.

   References:

 Palsson, O. S., & Whitehead, W. E. (2017). HORMONES AND IBS. IBS-and-Hormones. Retrieve d January 21, 2023, from https://www.med.unc.edu/ibs/wp-content/uploads/sites/450/2017/10/IBS-and-Hormones.pdf

[lyreleafblog]

☽ Crystal Magic / Part Two ☾

The last thing I remember before my surgery was laying in the high-tech operating room. That’s the kind of place I’ve always imagined aliens would abduct me to if aliens were to ever abduct me. It’s an environment that human beings would never naturally encounter. We have no real way to prepare for the way it feels to find ourselves laying down in that movie-scene-room. I remember the IV on my arm and the terrifying masked faces in ghostly blue uniforms swirling around. One lady kept telling me it would be okay, that I would fall asleep soon, and the next time I woke up, I would be on my way to recovery. I remember the tears uncontrollably streaming down my cheeks and the feeling of my hot, sticky palms in my clenched fists. I said a prayer to myself, just in case.

Just in case—and as I typed that, my brain slammed me back in time a dozen years or so, now, into first period of some dumbly profound class in high school with my eclectic teacher who ran across our desks to make a point. Oh, the good old Pascal's Wager gets us in a pinch, like when we find ourselves on the table in the operating room while the heavy, sleepy anesthesia is sinking into our veins and we’re left wondering both if we’ll wake up and what news we’ll wake up to. Back then, Pascal seemed convincing. At the age I was when I went into that operation, still freshly detaching from the pseudo-scientific realm of divinity-instilling diets at the will of my doctor, I felt only contempt for whatever deity I had been praying to.

I remember that not long after that surgery, however, I’d again found myself on the carpeted floor of yet another makeshift group-home with tarot cards spread out among the fuzz. My best friend at the time (not the lovely woman I had mentioned otherwise) had, right after my surgery, which infamously takes a very long time to heal from, decided to up and leave our household because she couldn’t afford her portion of the rent, or something like that. I felt very broken and disturbed by what at the time seemed like yet another psychic jab at my soul. For a long time, my tip-toes in the shoreline of the occult had convinced me of her long term presence in my life. We were, as one occultist my parents had taken me to in my teens (yes really) described a sort of soulmates. At the time she told me of her plan to leave, which would result in her share of our utilities falling onto me (which I could not at all afford), I, in a similar turmoil as Pascal described, turned to the little pieces of paper that had reliably told me the story of myself and my so-called soul mate for many years. Mind you, their  supposed predictions were even more erroneous and offensive in regards to my partner, Troy, which I’ll explain more thoroughly at some later date. Indeed, the trivial little toys told me; something had gravely changed.

I pulled the cards over and over, as any good little confused-skeptic does. The story goes, in the world of tarot, that, in the same way the observer effect might challenge physicists, one can not simply learn any previously unseen information without thus immediately impacting one’s own intentions. While neo-paganism might expound about the significance of expensive rocks, herbs, salts and garments, the role of intention, in a more bare-boned sense, is what we feel on the inside and not the ingredients or words we might outwardly work with. Thus, the tarot, in its modern iteration, discourages it’s own scientific testing. How convenient is that?

The inference is that if one found themselves seeking different answers than what they’d gone searching for, then they probably weren’t emotionally or reactively satisfied with the results. I won’t speak on the validity of diviners or the very-clearly-a-grift origins of professional divination, or the corrupted officiation of politicized, theological diviners. That is because, to put it plainly, humankind didn’t have reliable ways of writing stuff down at the origins of nature worship. Instead, lessons, morals, instructions, and even plain information all was often conveyed through storytelling. To say it shortly, in the way that storytelling does so marvelously, the most historically validated pathway into the “divine,” in its most raw context, is not through a transaction but an interaction. One cannot buy their way in, and people who sell divination are condemned (ironically even in Christianity).

I didn’t know what to make of my rationalizations nor the experience of my roommate and old friend erratically abandoning both our friendship and lease. I sat there on the fencepost of science and medicine, looking down at “common sense” on one side of the predicament, and still mythological nonsense down the other.  I attempted the well-studied routes of communicative psychology: I used I-statements, communicated my feelings and concerns and tried to garner some form of reasonable understanding of my decayed friendship. I attained absolutely nothing from the physical experimentation. Frustrated, I went back to my little cards and beckoned their advisement about myself.

They obliged me with more ego-eroding nonsense.  My tiny, developing family relocated upon my partner accepting a job, in the precise way of fate, that had long been offered to him, but that he’d held off from per my request to stay put and live with my old friend. He was to evolve, per the silly little tarot, and I was to enter a phase of rest now that she’d gone. I remember feeling so much heartbreak over the loss of my friend that any notion, guidance, or perceived wisdom was easy to believe in. All in rapid succession, now, I had endured what felt like a total loss of selfhood. I’d lost my prescribed system of ethics, which had only ever disconnected me from my inherent spiritual attributes in the first place, and then, nearly immediately afterwards, lost one of the closest people I’d had in my life.

Lo and behold, the paper-warnings warranted much more than either my young fiancé or I could imagine. We moved in January of 2020. By February, everyone was comfortably set up with their jobs. By March, a pandemic was taking over the entire planet. By April, we didn’t leave home nearly at all. Finally, the sedentary paralysis that I had so desperately been hurting for set in. We did nothing. We were depressed. Worst of all, as the clock ticked closer and closer to one-year after my endometriosis surgery, the sobering, saddening realization of my ongoing pain set in.  I had no daily grind to turn to for a long time. I was alienated from every possible distraction.

Again, I found myself picking paper on the couch—stacking my little cards up with a deliberate left hand and begging them for a solution. I realized that I couldn’t continue on my current path, ambitiously or personally, in the long run. With the state of the world being unforgivably glum, I couldn’t imagine carving out a future for myself. They told me, quite plainly, to take up my own advantage and work for myself.  

I refused. Too much was at stake with what, at the time, was a cushy and comfortable new job. I still clung to visions of myself as some elite-reigning corporate official. I’d work distribution—sourcing, or hell, even marketing if I had to—anything for the depiction of success as a blouse and a clipboard. By the end of 2020, my health had deteriorated astronomically. It was then and in early 2021 that I was diagnosed with a host of conditions that explained the remainder of my pain. I should add that my move was from a very rural town to a massive metropolitan known for producing some of the most effective healthcare in the state. It felt like a nightmare and a miracle all at once.

It was several months before the dislocation that would change everything for me when my first hint at what I might now describe as spiritual reality tickled me. I had my ongoing pain, sure, and my joints had become a very frequent complaint, along with what I called vertigo. I blamed myself, of course, compulsively, as I’d long been taught to do, and had refused to consider that anything else might warrant investigation until I had an especially rich dream. It was so intense that it occurred in sections, as I’d become so anxious at various points that I woke up in real life panting and sweating, only for the same dream sequence to resume when I fell back to sleep. I’d like to add, too, that until recent, current weeks, again thanks to medical therapies, I didn’t have all of that frequent of dreams in recent years.

I dreamed of my mother and I driving on an old country road, like those outside of Tallahassee, made of orange dirt and shadowed in a dense canopy of cedar trees. In the dream, she hits a boy on a bicycle with the vehicle, but rather than running him over, he sinks into a puddle on the side of the road. We begin going “on the run” essentially, only to make it home and discover the law has beat us there. They take my mother away while claiming she is hysterical, and I go to my father’s house. It all seemed so sensibly dreamy up until then. Nothing made any sense, and nothing needed to. As a kid, I’d always been a relatively good lucid dreamer, often aware that I was dreaming and able to influence my dreams. Once I’d gotten to my father’s dreamscape house, however, the environment no longer felt like a dream. I could no longer wake myself.  

It was around the time of that realization that my dream-father handed me a landline phone with a long, spiraling cord that stretched forever through his house. He said that my mother had some new last words for me. When I took the phone, I heard her say “We have to stand together. We have to fight.”

I woke up terrified. But then, distracted and busied by the chaos of working a brutally active job with declining health, I went on to soon forget all about it. After my shoulder dislocation, however, suddenly, my mother became the primary subject of my doctor visits. I quickly learned that the mysterious, inexplicably bad things about me were in fact real, treatable, and absolutely certain to be from a common genetic condition that I, without a doubt, inherited from my mother. I remember showing my doctors my father’s messages about my mother’s flamingo-leg stance with her hypermobile knees overextended and their calm, familiar voices explaining that yes, this is common in families. Finally, I had the answer to not only my pain, but also my more systematic health issues. Somehow, despite the reigning grief and trauma of having to dig through an urns medical history to create a map of my own, particularly when those ashes are the body of your own mother, I forgot about what had felt like that prophetic dream.  

I spent a long time with my head down, so to say. I was focused on my education and my work, so those were my biggest priorities. Certain of my health problems were not budging to treatment, however, and my symptoms had certainly begun to weigh the scale down much harder on the “I can’t survive like this” side. I was struggling with my insurance not covering a medication my doctor had prescribed in hopes of bettering my situation, and which I absolutely could not afford. I had been told I’d need a hysterectomy at 24, which came and went without me having one. The dark feelings about permanent infertility and early menopause clouded any of my future aspirations.

I needed help again, and I needed it for free. I reached out to my old doctor in a support group he’d always had a large presence in. I began following his nutrition regimens. At this point, I should add, I had been well recovered from any disordered eating for a very long time, so I finally felty confident in exploring a dietary approach to alleviating some of my symptoms. The same doctor had agreed that changing my diet would have to be something I only did if I could ensure I would not allow myself to restrict.  I changed my diet profoundly.

I won’t talk about my changes in this article (novella?) but I will say that they immediately resonated with a quieted portion of my soul. When I realized that food was helping me heal from many otherwise irretractable symptoms, I again felt this blissful, long absent connection to the cycle of life and the world itself. Besides putting my own pain and suffering into perspective, it allowed me to recognize that not everything in the world was bad for me—not even the things that some experts said were, like red meat.

What happened next was nothing short of magic since misinformed science is still the loudest voice in regards to endocrinological health.  Instead of my blood sugars worsening, they immediately normalized. One thing I hadn’t discussed much publicly was that I had begun to experience the early phases of kidney failure. This was theoretically explained by the overbearing size of my uterus physically pushing into my kidneys and thus decreasing their functionality. My blood tests, however, proved that this was not the case; instead, my kidney damage was clearly being caused by the one thing I had come to avoid in my diet thanks to Dr. Fox, which was sugar. I remember the overwhelming joy as I sat on the couch, opening the online portal to view my blood test results, and exclaiming to my S.O. that my kidneys were again, finally functioning perfectly—everything was in the “green” range. This would be the first time they appeared to function normally (via blood tests) since before I was 17 years old.

I became much more able-bodied. I was calling out of work less, able to withstand much longer trips to grocery shop and alike. As the months went on, I also, finally, began to gain a little bit more weight. I quickly exceeded that bottom-of-the-barrel minimal goal weight of 103lbs and went on to get to around 105lbs. I know that sounds extremely marginal, but for my body type and height, that’s essentially the threshold between being underweight and being a normal weight. Even just a couple of extra pounds can push a very thin person into a much healthier weight range, and that’s exactly what had happened to me. Now, my doctors could no longer even bring my weight or my blood tests up to me because finally, neither were any longer a problem.  

Science had only left me missing one thing—the physical strength that I had long ago lost to my immobility and pain. Deconditioning left me with overt, embarrassing muscle wastage that had my arms looking frail and elderly. My legs were like toothpicks struggling to hold up an apple. I had been prescribed some physical therapy immediately following my Ehlers Danlos diagnosis, which is the most common course of osteopathic treatment for the condition. Unfortunately, despite that my physical therapist told me she was aware of the needs of my hyper-mobile joints, the actual exercises she had prescribed to me seemed to only exaggerate my pain. The only possible solution she’d had for this was essentially starting me out with lower repetitions for the specific exercises. I quickly realized this simply wasn’t going to work. I wasn’t getting stronger—instead, I was just getting hurt more often. I will say that she did teach me a few tricks to instantly stop my muscle  spasms, which definitely did work and which I still use daily.  In terms of Ehlers Danlos, however, PT wasn’t cutting it. Both my doctors and I continued searching for more specialized Ehlers Danlos care but couldn’t find any local organization that accepted my insurance.

Consequently, I dropped out of PT. It wasn’t helping and I didn’t want to pay for something that wasn’t helping. I was sent off with blanket-advice to avoid a whole host of “dangerous” exercises that supposedly increased my risk for injury. One of those forbidden motions was the motion of rowing, as in, rowing a boat. There were others, too, but that’s the one that matters for this story. The year ended with myself as a medically-supervised low-carb-eater for who, in theory, exercises besides supine flailing, were apparently dangerous. It seemed simple enough—just don’t row any boats, or I’ll self-induce an injury and be deemed an irresponsible, wild, non-compliant maniac.

In 2022, my partner and I planned a beautiful trip to the islands off the west coast of Florida. We had fallen in love as children, in part, over a shared and immeasurable adoration for the natural world. We are archetypally crunchy folks. So, when we discovered some dog-friendly canoeing options near our hotel, my S.O. eagerly assured that he would simply do all the rowing—and we’d go and have a great time. I’d be the little exercise-forbidden passenger princess as always.

As it turns out, putting a dog on a small boat seldom goes however you think it’s going to go. Bonnie, our pup, was freezing cold on one of the early winter mornings we found ourselves on the boat in the middle of the mangroves. As Troy, my partner, attempted to bundle her up in our excess of sweaters, but without accidentally throwing our lockbox into the bay, I found the ores in my hands. The wind around Sanibel Island that morning was high—high enough to scoot us along the rippling surface of the still-dark water just after sunrise very quickly—so, like any human who’d ever been outside before, I acted on instinct. I steered us a bit. I propelled us some. Before I knew it, I was speeding us along, pushing our tiny vessel off of the wet roots using the ores, and piloting us under the glittery sunlight sprinkling through the tree-covered stream pathways. My partner was amazed. Seeing me use my body like that, for the first time in years, filled him with joy.

I remember that we tired ourselves out after a few good hours—especially once the sun really came up, and was beating down over our heads. Here in south Florida, a reasonably chilly morning can turn into a scorcher before noon if you aren’t careful, and sitting out on the open water in our layers of sweaters had us heating up a bit. As we disembarked, I recognized the sensation in my arms—a feeling I hadn’t known since childhood.

It hurt—but it didn’t hurt. I was sore, but not injured. The swollen sensation of my pumped up shoulders provided this incredible sense of pressure against the usually wining, screaming joint. There was no painful clicking—like after every iteration of “ball on wall” (one of the most common PT exercises for shoulder problems). It was noiseless but pumped, swollen, heavy and sore.

“Oh my goodness,” I told my partner, “We have to go back again tomorrow!”

On the next day of our vacation, we found another just as beautiful bay to shoot off from.  The boat truly became my vehicle. I propelled us towards the mangroves so that the pup and I could listen to the symphony of waves crashing against the roots, and the beautiful, melodic tones generated by the harmony of the ocean meeting the mangroves. I remember thinking that I’d stumbled onto a sliver of whatever folks mean when they say “god.” Then, I propelled us towards a little, temporary island that had, thus far, survived the most recent belting of hurricane season. My small family imagined how the local birds prepared for thunderstorms on their tiny, waterlocked properties. We watched pelicans glide over our heads as we paddled our way back to civilization to dismount for the afternoon. Again, I recognized from the moment I stepped onto the floating dock that I was surprisingly fine. In fact, I felt better than I had when I first got on the boat.

It wasn’t long after we returned from that vacation that I again found myself growing suspicious of the world of science. I kept asking myself… why would science (medicine, in this case) tell me to avoid this specific range of motion, when in fact, anecdotally, I found it therapeutic? This line of thinking fostered a worrying swirl into other speculations about the alleged treatments I’d been prescribed over the years. Akin to my experience with endometriosis, which I will at some further point more vividly document on this profile, I realized that other chronic conditions also had their fair share of disinformation circulating even within the walls of medical offices. Movement wasn’t causing my joint degradation. On the contrary, movement was the very force that had kept me unrecognizably strong in the first place.

By May of 2022, I had effectively started working out again. I had peeked around the internet to discover that there was an entire world of hypermobility-dedicated fitness concepts that were readily accessible. Jessica Valent shared a video about hypermobility-focused Pilates that, one day, after way too much research, I finally decided to try. Sprawled out in the entryway of our breezy near-coastal apartment, and on the cold, hard floor, because at the time, I had no mat, I got into position. My knees immediately crunched under my weight—so, laughing, I slipped my silly little compression braces—the ones I had to wear to work, to go walking and to go grocery shopping—on over my legs and got back to it. The routine was absolutely begrudging. I was so physically weak that I could hardly hold myself up in the postures Valent revealed, so I used her suggested modifications to get going.

After a few weeks, doing the practice roughly every other day, I realized that it had become effortless. Wow, that was fast. Alright then, I thought. I only barely realized that I was becoming “addicted” to how good the strength made me feel.  Lets dig in.

[lyreleafblog]

☽ Crystal Magic / Part One ☾

After years of therapy and many hours of candle lit meditation, I have realized that the reason I became estranged from my spirituality is because other human beings deliberately used it to manipulate me. Now that I am more self-aware and able to identify that kind of manipulation, I am longing for an aspect of my identity that I’ve been keeping myself away from. It’s interesting to be disabled and still find oneself drawn to the earth-worship that celebrates our own uniqueness here in a world where calling someone “special” is a school-yard insult.  Following a decade of questing to figure out if a physical science could explain the so-called healing properties of crystals, I discovered that the answer is that it simply doesn’t matter whether science has an accepted, stable explanation. Science can only vaguely guess how the Tylenol I just took magically immunized me against the sensation of my dulled-out-neurosurgery contractions. 

 Instead, I have learned, through trial and error, the science of biology is not only perhaps more important to my goal, but itself is as much of a science as the science of cinematography. Less of a science, really, and not at all an equation—biology follows the patterns of communication.  It is a process that neither high priestesses nor philosophers nor doctors or chemists can properly articulate.  In a world of genetics, everyone is biologically imperfect, and imperfection is the very variable that thwarts our demise. The science of biology is so powerful that for nearly ten years after I was diagnosed with bradycardia, deliberate, diligent efforts towards daily meditation— towards meditating in the doctor’s office while sitting bare-assed in a paper nightgown— did much more than make me feel normal in myself, but presented a level of confidence that demanded my autonomy. I don’t want to, and I look like I know what I’m doing, so people have listened.  I didn’t want to be “The Sick Woman” like my mother had always been to me, and so I refused to become her.

 But now, I know better. I know better than to fake normalcy in front of my doctors. The secret of my weakness protects absolutely nobody because I am a 25-year-old adult and there is no longer a risk over the legal supervision of my neglect. I no longer must pretend that I am not sick to escape localized or systemic abuse. 

 The things I haven’t talked about are incredible. I’ve been talking about talking about them for years while I am never ready. Have I told you just how deeply this tribulation can devastate a lineage? I’m sure I’ve muttered about it in stupid, cryptic, passing glances. Like a little whisper on the wind, I’ve been tickling my audience, covertly trying to pull this experience out from within all of us so that I can compare myself against it.

 Allow me to put it simply: no, I did not have magical auric vision for seeing ghosts and dragons like the Christian Counseling service my mother dropped me off at when I was in first grade would have somehow, apparently, permanently convinced everyone else of; instead, I had un-medicated seizures. My mother of course simply would not have such a thing. She was the one with real problems, after all—with arthritis and endometriosis and a clinically labeled somatic disorder that she refused absolutely any form of psychological intervention over.  Despite that I was born weeks before my due date with an infection serious enough to prevent me from even going home in the beginning, I was never allowed to actually be sick. Instead, I had to role play as being spiritually broken.

 In real, scientific and clinically-repeatable reality, I was not the spawn of a voodoo curse. I had multiple neurodevelopmental abnormalities, all of which with offensively practical, simple and very truly human therapies. I grew up in a household that defaulted to blood-ghosts when they didn’t already have the answers to their predicaments. Somehow, they still knew better than to let the outside world become aware of the depth of that phony ignorance. Children like I was seldom invite friends (spectators) over. The series of (non-biblical) therapists I’ve had over the course of my lifetime have all explained it away with the infamous label of “neglect.”

 That’s why I stopped— why I put the pendulum and the cards and the long skinny rainbow candle collection into a box under the bed and then tortured myself for craving the connection that had, in some way, always been there for me. Did you know that this connection is a big part of my marriage? Of course you didn’t. Nobody knows. The blood-ghosts got me, after all, but not in the way my parents were ever expecting. I still hear the voice of my own old crone talking down to me over a flame lit crucifix at the dusty, cigarette-ash-stained iron wrought kitchen table. It appeared like a scene from the original “Carrie.” I remember looking at one of her eyes—just to the left, behind her head, at the idyllic floral pattern on the country curtains a much more normal version of her had once hung over her sink window. She described how stories of hell terrified our savage ancestors into walking with her lord. I sat baffled at the hypocrisy that a great spirit became a white-but-middle-eastern man all because of Christopher Columbus—who we hated, despite enthusiastically adopting his beliefs. I stuffed all the quartz and more colorful variations of quartz into an old flimsy shoe box and left them in my closet, under my S.O.’s utterly unused paintball bag, for years.

 My health dwindled. No, it wasn’t because I’d shaken the sand and crystals out of my baggy, paisley pockets. It was because I’d had them there in the first place. I surrounded myself with the walls of a man-made echo chamber so that every sound I heard was merely a reverberation of my own, already existing thoughts. Crystals in my pockets would keep me healthy, therefore, I believed, I didn’t need to save up for medical appointments. Moreover, I had long deluded myself into my own pseudo-spiritual rabbit hole—one that is so extremely common that a hashtag describes it.

The #vegan community wasn’t exclusively self-perpetuated. I hadn’t really thought the lifestyle would be feasible for myself until the pediatrician my step mother had selected for me cooed in approval over my sixteen-year-old-self-declared-vegetarianism. “In fact,” she went as far to say, “You could even go vegan and still get all of your vitamins and minerals.”

 She proceeded to explain that I could get my iron from raisins! Y’know, I once had a teacher who told me that everyone gets exactly one exclamation mark that they’re allowed to use for the rest of their lives. I choose to implement it just then because I really want to convey to you the valley-girl enthusiasm in how this middle aged doctorate-wielding woman told me, a visibly anorexic teenager who still used four fingers to hold a pencil like a toddler, that raisins would cure my pre-vegan low iron levels.  Unfortunately for everyone involved, I would outwardly lie about my health in all possible situations and do nearly anything to avoid both medical examinations and treatments. There are reasonable reasons for this behavior—at least, reasonable given the cognizant capacity of an awkwardly neurodivergent, neglected teenager—that I will not get into here. I successfully avoided much supervision of my health. When I turned 18 years old, my health insurance became much more expensive and I was removed from the plan. This ensured that I wouldn’t be able to have my health monitored even if I had been willing to allow it. I opted to keep up with my life-long-prescribed meditation.

 I doubled-down on what, at the time, was an overwhelming majority opinion in the scientific and medical community. Meat was bad, phytochemicals and fiber were good. Nobody could possibly eat too many fruits and vegetables, ahahaha. Salt was, of course, super-very-bad for you because it caused bloating! Bloating just so tanked my body image. Like I had mentioned in my prior entry on this blog, I was a happy-go-lucky-ed-recovery girlie—one who had once had a doctor and therapist supporting my newfound restrictive diet. I found every possible justification for my behavior.

 There’s a bit of a lesson, I suppose—the moral of the story that I’m sharing with you today is this:

 Humans can justify anything.

 Justification doesn’t require justice—which is an immeasurable, immaterial, ethical philosophy vocabulary word— but merely willpower. Justice might describe something more value-centric—as in, fiscal value—but justification is the decision to subscribe to a set of beliefs, against which to compare the actions of oneself and others—and even more ironically, is so mutable and fragile that each individual warps it circumstantially. I had suddenly found myself consumed a new system of justification upon my lifestyle change. My new sense of justice was validated by pillars of authority I once felt like I had been rebelling against. I will clarify now that apparently, those pillars of authority have a bit of a controversy regarding their alleged support of some parts of the new justice system I had taken on. At the time, however, it was hard to find a legitimate shred of scientifically literate doubt in the idea that abstinence from animal foods prevented all known diseases.

 I remember a time much more recent than my aforementioned kitchen curtain scene. Instead, in this memory, I was a messy, frumpy 18 year old runaway in a town I’d never even been to, sitting on the tip-jar-penny-littered carpet of my $375 per month apartment bedroom. I remember hurting, aching, really, with my spaghetti-arms wrapped around my abdomen, and swaying back and forth in the warm sunlight of northern Florida’s golden autumn afternoon. As my insides curled and twisted, I retched and dry heaved next to my box spring set up. I kept telling myself that it couldn’t really be all that bad. I simply was just a very dramatic human being—maybe thanks to all those high school years spent analyzing Tarantino’s foot fetish through his so-called art. The thought of it all being in my head was an addictive, dark and disturbed comfort that had long kept my sensitive mind from facing the reality of being born disabled. It was like a lucrative secret—it feels, if one can even postulate such a thing—the same way that not eating for days once felt in my mind. I feel like I’m winning when I succeed at hiding the pain.

 So, I told myself, over and over, that I had already gone above and beyond to eliminate the risk of sickness from my life. I was living a lifestyle that the global authorities on health and nutrition were broadly claiming eliminated much of the risk, so I justified my action by repeatedly regurgitating what, at the time, was one of the most common opinions. I crafted my little echo chamber and refused to communicate with conflicting information. As I sat there weeping on the floor beside my bed, way back in 2015, in that sparsely decorated, crummy little apartment room, I recited instructions I’d received years prior in less-than-ideal-therapy. I told myself that my pain was a fuzzy-wuzzy-pink pillow, scratchy and stringy and present. I tried as hard as I could to depersonalize the sensation into a mental object I could then discard. No matter what I told myself, it continued to feel real to me.

 I was willing to keep this charade up for quite some time. I believed in my adoptive ethics so thoroughly that I was clearly willing to suffer for them—after all, the only thing really wrong with me was just anxiety, right? I went as far as humoring the idea that perhaps my own suffering was somehow divine in itself; Christlike, since that’s the branch of religiosity that had framed my upbringing—and to be Christlike, I would, like Christ, suffer at the mercy of life around me. I force-fed myself dated, blurry slaughterhouse footage from establishments whose exposure had long ago warranted and attained their closure to mentally drive myself farther into my position. Sure, my hormones were clearly failing me and my pain was taking me over, but at least I wasn’t being skinned for leather-making.

 It all tied back into a warped sense of spirituality. Many spiritual and religious practices discourage an overbearing ego and even go as far as to claim that human existence is inherently plagued by our spiritual inadequacies. At the root, many western practices argue that humans are incapable of perfection but should strive to be some form of tolerance or good for the sake of our own larger wellbeing. Egoists, however, perhaps even King James type of egoists—have found many ways to flounder the values of individual interpretation. Instead, egoists infiltrate the sensitive, vulnerable communities who flock towards the historical and perhaps even anthropological inclination of human beings towards some form of religious practice.  

 I had allowed my egoist-prescribed sense of ethics to supplement that missing component from my life. As I’d described, my notion of spirituality revolved around my own incapacity for a long time, so my newfound connection to the world around me, which I nurtured, supposedly, through my disciplined actions, occupied a void that I was raised longing to fill.  This obsessive behavior made it far easier for me to cling to my beliefs, especially since they coincided along a natural vice towards avoiding food. As I ached on, and things worsened for me, I began seeking every possible solution that my new religion tolerated—but never, of course, considered that my own behavior might be playing a role in the pain I experienced.

 I remember this period vividly, with a curdling sense of horror, because of the mix of confused desperation that strung me along through it. At time, my blessed little group of girl friends and I would frequent the expensive Co-Op grocery stores. Never-mind my face-consuming acne, which I spent great efforts pining over “all-natural-cruelty-free” labels for any product that didn’t contain some form of comedogenic oil, I also disproportionately veered our trio towards the extra-expensive isle of supplements. B12 and niacin, magnesium, iron, and zinc were readily available, right alongside the devious little bottles of mysterious, magical hormone-curing pills. I had already done my own (little g) google research, fully aware of some of the grossly underregulated concoctions I wanted to blame my next catastrophe on. I struggled to find Vitex and Dong Quai that didn’t come stamped out in those little gelatin capsules—as I was a pectin-only type of gal and would apparently rather suffer than take (fake) medicine (that I didn’t yet know wouldn’t work). I came across some vegetarian Evening Primrose on one little shopping trip and added it into my arsenal.

 I took fistfuls of these pills every single day. To this day, I take a lot of pills most days and I know that I probably will for the rest of my life. Still, nothing can compare to the discomfort of having to take these three bulky pills evening primrose pills three times a day. I remember my period had come and gone without nearly as much incident or a reliance on nearly as much ibuprofen after a month or so on my magic-oil-pills.

 Oh, boy, did I think I had done it all. I remember bragging to my friend, who ironically, has EDS too, and was diagnosed years before I was, (and who has been a tremendous help and friend to me since the day I met her) about my au-natural period pain remedy. I have no idea how she ever had the stamina to tolerate my bullshit and to this day I still do not.  I obviously had no idea what I was talking about. Nevertheless, I sure thought I did… at least for a few more months.

 It was right around the time that I started dating my partner when it seemed that my new all-natural-cruelty-free-supplement had suddenly and inexplicably stopped working. Older, more mature me questions if the coinciding pint of ice cream he and I somehow consumed in one sitting every Friday night might have been just a little too much sugar for my extremely fragile endocrine system to handle. My pain became horribly, upsettingly bad all of the time.

 I had no insurance at the time, so I used a service called prjktruby to initially talk to a professional about my pain and figure out a reasonable route for treatment. Right away they recommended that I take a pretty conventional combination contraceptive and encouraged me to skip as many periods as I wanted to by avoiding the placebo pills.  Being that I had started a relationship that had the capacity to result in a pregnancy for the first time in years, I was excited by the prospect that this class of medication is even more effective as a contraception than some of the others available. Believing that I was perfectly healthy, too, besides what I thought were a few supposedly “minor” issues I had been diagnosed with earlier in life, I saw no reason to actually monitor my own vitals or get regular bloodwork while on this medication.

 The medication did not effectively stop my menstruation which was much of the purpose of going onto it.  I had also developed a new host of symptoms that were extremely debilitating. I had honestly completely forgotten that my pre-existing stomach issues were something worth mentioning to a doctor, so when I did finally talk to one about the side effects of the medication, I would up getting re-diagnosed with IBS. I was experiencing what were pretty normal symptoms of my already existing stomach issues, however, and just didn’t know because I had only experienced other symptoms of it previously (and since). More concerningly, this doctor ensured me that my combination-hormone medication was not responsible for my symptoms and argued that perhaps I was misrepresenting the accuracy of my perfect use of the pill. I did some more googling.

 As it turns out, there don’t seem to be many studies that do a good job of testing this out—even now, far into the future. On google scholar, I couldn’t find one to reference here. But, fortunately, in the areas that science has wrongfully or willfully ignored, we can fall back on the philosophical source of deduction itself; we can rationalize anecdotes and draw inferences from existing ideas.

 Looking into the realm of existing ideas, I discover many articles with a similar ring to them. One begins with “Even though several hormones…specifically control the activity of the gastrointestinal tract, there has been curiously little research to date on the role these hormones might play in IBS. However, there are a few indications that aberrations in gut hormones may be a factor in IBS symptom production” (Palsson & Whitehead, 2017). It’s clear that there is evidence that supports the anecdotes of the masses. Speaking of the anecdotes, let’s take a moment to explore some of those as well. This thread in an online forum is just one miniscule example of someone’s experience with this phenomenon, but one comment paints a broader picture. User kd1410 writes “In the back of my mind I’ve wondered if birth control is the root cause of my IBS issues (I know it’s somewhat common from reading here).” User goldstandardalmonds replies “You’re right it’s common from reading here. It’s been posted about here a lot. I’ve also come across it on r/askdocs periodically so it isn’t out of the question.” It would have appeared that other people had already been exchanging about this dialogue.

As any good google-er does, I compiled the data I could find and deduced my way into a decision. I took myself off of the hormonal medication. Now that I had a boyfriend and what not, this was a rather big deal for a number of reasons. I still remembered my partners tragically bad attempt to convince me that he was in fact completely okay with using good old, reliable rubbers.  Regardless, it was evident to both of us that this medication was having some kind of negative impact on my health, and so we went into our new plan together.

My symptoms kind of, maybe, slightly improved. I remember announcing that I could see colors more clearly and felt like myself again—which is another oddly common retrospective comment among birth-control-abandoners. I had again decided to experiment on myself with the herbs, oil-pills and period-cramp-teas. I naturally persisted with my strict vegetarianism. Mind you, I had previously had what were identified as allergic reactions to both eggs and dairy products—namely, from using shampoo that contained either product—and I couldn’t imagine that adding those ingredients back into my diet would have had any kind of positive impact, so of course, my abstinence was the one aspect of my consumption that I never thought to change.  Again, my health seemed to temporarily get better. Then, it got much, much worse.

One of the darkest times of my life occurred in that period between the medication, Aubra, and what would eventually become my next, and this time permanent medication, Norethindrone.  Shrouded in a depressing cloud of darkness, my household became very still and quiet during that lull between medicinal interventions. Days began to blend, enmeshed entirely by the unbridled experience of pain. I remember feeling grateful, initially, that the worst of my so-called period-pain had again seemed to retract back down to only a couple of weeks out of every month, but before I knew it, the sensations of menses became borderline omnipotent in my life.

 It was around this time that I remember losing most of my general mobility. Now, an older, more mature version of myself can see that the pain in my abdomen disabled me to the extent that the rest of my body would become dramatically weaker from my lack of using it.  At the time, I was only 21 or so, and had neither the self-awareness nor the physiological experience necessary to infer how chronic pain causes cumulative damage to a body, even in areas outside of its source. Rather, from my perception, it simply felt like I was dying.

Every day, it seemed, another new problem emerged. I remember that I had started having trouble with my daily ritual of walking home from work. I remember noticing severe pain in my shoulder as I would try to style and brush my hair in the mornings. I had trouble with every kind of food I could possibly eat—but especially, and specifically, the foods that had for so long been pushed by society, healthcare providers and every other outlet I had ever encountered as being the healthiest choices possible. My food troubles were agonized by the even still worsening chronic nausea and vomiting that by now I’d been living with for many years. I persisted in my egotistical earth-worship.

The crystal magic hadn’t quite finished draining out of me at that age. I replaced a worn-out, molded tarot deck that I’d had since childhood with new, shiny, clearly synthetic-gilded cards, hoping that perhaps paying some form of financial respect to the tools of whatever divine I had yet discovered would have any chance at changing my current path. I prayed to non-existent entities while repetitively reminding myself that my innate speculations against their reality were the true origin of my physical suffering. I threw up almost every single thing I ate and ran off the fumes of the American Spirits I’d stolen from my partner to keep in my wallet. Somehow, as my hair thinned and my skin yellowed and aged decades in a matter of months, I still didn’t think to question the raw-fruit-and-kale-salad.

Eventually, somehow, my partner found something online on one of the many, many days we spent in our damp little roach-infested Our-First-Place-Together. He had encountered either an article or a forum or something that explained one layer of the living conspiracy that is endometriosis treatment. At that point, I had become so desperate for relief that, while I clung to the soymilk and spirulina, I had decided that, fuck it, I needed whatever surgery it was that my father had told me my mother once underwent for her own endometriosis treatment. Known as laparoscopic ablation, this operation consists of creating small incisions where a surgeon then uses a tool to burn the lesions of suspected endometriosis. This process achieves nothing and is entirely a waste of both the duration of human life and the limited resources in the medical world (in my totally unqualified but inevitably correct patient-opinion). My partner, however, in his research had found that other people self-reported benefiting from a different kind of surgery—one that was markedly less likely to result in recurrent pain or damaging scar tissue.  Excision surgery was a different ballgame and perhaps even more importantly, to the matters of science and research, that is, the excision surgery (cutting the diseased tissue out in entirety) technique allowed for genuine pathological analysis to occur. By one technical definition, the ablative treatment of suspected endometriosis could not actually itself warrant an authentic diagnosis because the diseased matter, once destroyed by heat, would become unidentifiable.

I think that this was probably one of the first times in my life that I felt a sense of hope regarding the scientific-medical community. I had always been a science-kid growing up, to the extent that, to this day I have held onto a ratty old science-achievement-certificate, still framed, buried deep in the crevices of my closet so that I might never rid myself of this lethal battle between crystal magic and underfunded medical research. Suddenly, science had the answers again, and suddenly, I found myself looking at this gaunt, ugly girl in the chipping full-body mirror and wondering how I’d let her fall so far into so-called grace.

The story of how I first got my health insurance through my job will be an article all on it’s own, so I’ll save that tale for  later date. To simplify, I got insurance and my partner and I began our pilgrimage from Tallahssee, Florida, to Jacksonville, where Dr. Michael Fox operated out of Jacksonville Center for Reproductive Medicine or JCRM. Dr. Fox is a life-saving surgeon with the bedside manner similar to that of a schoolyard bully. In his office, after watching me wring my skinny little vegan fingers while explaining my magical pain, he metaphorically turned me upside down and shook the crystals out from my pockets.

“A vegetarian or vegan diet is one of the single worst things you could possibly do to your health.” (I sure hope I’m not misquoting him, but since he’s vocal about this perspective online, you can probably find some of his opinions in your own research) He had told me. He insisted I immediately quit my diet—which was also my entire identity due to its ethical associations-- and eat as much meat, cheese, eggs and the like as I possibly could. I was around 95lbs and I was given to goal to get to the triple digits—but ideally 103lbs, before my own endometriosis excision. I had a few months, but if by the date of my pre-op, I was not a safe weight, my surgery, that I had been waiting and fighting and suffering and dying for, would not happen. I would then loose my job from my inability to work, and after that? There would be no after that.

I made the weight. Then, there was my heart, which worried me because on the morning of my surgery, as we left while it was still dark, I ended up puking in the grass on the freeway, as my stomach was processing the bowel prep a bit slow. Vomiting always at least temporarily worsens my heart rate, so I assumed the worst—that I’d find myself sitting there waiting for anesthesia for them to come and tell me that, despite even throwing my system of ethics away and gaining weight, I’d eventually find myself writhing outside, unemployed and utterly hopeless. To my surprise, on the most important day of my life, my heart, for once, decided to simply play along. My vitals were strong. I was strong—strong enough, anyway.

[lyreleafblog]

it’s only called seduction in the aftermath

it’s only called seduction in the aftermath 

(Fuck You Pythagoras) 

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

 hey fuck you pythagoras,

you know that i’m too good for this

  not sweet like sugar, more like licorice

go lay your laugh down on this limerick

  and that’s the kick, i write deliverance,  

paragraphs, but you’re illiterate 

a kaleidoscope of fucking gibberish

the politeness rhymes with illegitimate 

  the infatuation prohibitionist 

spotted spiritual exhibitionist 

and i suspect you’re full of shit

  stitch and unstitch my skin,

look within, hypocrite 

  won’t you strum me just a little bit 

is it your fault if i ask you for it

not the kind of bitch you need to babysit 

but you’re a daffodil damsel up late getting moonlit

  wind your whimsey up with mine 

over coffee, whiskey, wine and time

become submissive sweet and so supine 

at your feet if you wanted a taste of the sunshine

we are never going to go bonding in the daylight

if you wanted to you could eat me up for sunrise dinner, 

but junior, you’re the beginner, not to be rude

and pythagoras

fuck you

call me Sappho, 

have a girl, i have a few 

boring but the views nice, all Mary-Sues, here’s my advice 

get fed while it’s hot for you, i’ve been saving you a slice

because my vices don’t care about propriety and niceness, what’s fair is that 

 you could follow my voice through the glare,

get there to paradise

[lyreleafblog]

"September morning" by Andreas

[lyreleafblog]

[lyreleafblog]

The Legacy

A (very long) History of Lyre Leaf

Well, it’s come time to do some real talking. I previously introduced myself on a more baseline level, but today I would like to go into some more depth about what this blog is, why it is what it is, and how I’m going to move forward with it. Let’s get into it.

I grew up on the internet—and I think that’s one of the most important talking points to start out with on this blog. A lot of people in my generation grew up on the internet. We were the children of an era with divorce rates higher than ever seen before or since. We became latch-key kids with social anxiety and developmental giftedness that wore off in middle school. Many of us were incredibly poor because of our familial division, what with un-met child support and undocumented hereditary gambling running rampantly outside of the sanitary family courts that determined our custody agreement. We weren’t going out because we couldn’t afford to. Breaks from school were spent at home, most often alone, if not left to mingle with a sibling or two, with nothing to do besides satisfy our curiosities. Of course, when we look at history, it all seems so simple and crisp; Of course children are curious little things, even the older fifteen-ers who think the three long years separating their consciousness from a voting ballot are mostly pointless. Without present guardians to answer our trivial curiosities—without a voice waiting to answer the utterly predictable “why is the sky blue?” banter—we defaulted, simultaneously, to a different authority. We grew up on Google.

As I typed that, just then, this reality manifested in the between-the-lines crevices of societies’ infrastructure. Allow me to clarify: Sally googles all her questions. Did you see that? The word “google” is a verb now. It no longer requires the elegant capitalization of a typical proper noun, such as Bing. Nobody “bings” a question—and Microsoft Word knows so. Google raised a generation. Just like how the heaviness and context of the word “Mother” as a formal, brand-name account of an individual becomes the given expectation of “mothering” as we age into our theory of mind, with our awareness that our parents are not “God” but “gods” with a noteworthy little “g,” and so “Google” becomes “googling.” It starts at the first sign of a book report for which one has never read the book in question.

I didn’t have the chance nor the sense to consider actually asking a parent what the hell had gone wrong with me. I had grown up googling, with a little “g,” every time I had a question. At six years old, my mother gifted me her dinosaur; a Windows 98 PC. I was diagnosed with asthma after a bout of pneumonia around six years old and I’d been prescribed daily breathing treatments. Those treatments went down with a lot less fidgeting when they occurred in front of a computer, so my mother was sold. Little would she know that I would soon take over her brand-new Windows XP computer to live vicariously though The Sims. My own googling started out gingerly: Diva Stars, Barbie, My Scene, Polly Pocket, Cartoon Network, Disney Channel, Winx…  I am bating you for nostalgia without shame. It escalated alongside my (perhaps unfortunate) rapidly evolving preference for the written word. My search history evolved into how-to-add-hexed-files-to-Babyz and how-to-add-custom-Catz3. By the time I was 8 or so, I was fully enthralled in The Sims and almost all my time on the internet was spent learning about how to make objects for the game. Somehow, I actually achieved this, which shocks now-adult-me.

Google helped me discover things all on my own, too, such as the landscape of online friendship. My first account in what I guess one could call the online-social realm was none other than the massively underrated Barbie Girls franchise. (For anyone wondering, I am still most certainly obsessed with Barbie and closely follow Barbie content—please feel free to send me pics of any cool dolls or other Barbie things you might have.) I realized right away that this early MMO-esque digital universe model suited me much more than socializing in real life. Canned chat (pre-written dialogue options used in place of traditional instant messaging in online multiplayer worlds) generally prevented me from being bullied, which had been a significant problem for me at school. I especially appreciated creative elements in these kinds of online environments. Google helped me find more of them.

Eventually, I got into the world of MMORPGs. It’s all my mother’s fault. Before a custody agreement changed, I grew up with her and her unbelievable addiction to Adventure Quest. She was on the leaderboards (The Feline Fatale, if you’re wondering, way, way back in the late 00’s). While living separately, we played Mabinogi together (Long live Elrinnia, elven savior of the goddess!). As I got even older, we became more and more distant for a number of reasons, and google persisted as my primary authority on information. I found more communities in which to practice my social skills.

I got into sharing my writing online and even went on to make a few YouTube videos with my stepsiblings and friends. I won a few writing awards back in the hay-day of the Young Writers Society. I experimented with art communities and game groups.  I eventually found my way to Tumblr, which, at the time, I had only even seen before while peeking over the backcombed mane of our middle school scene-queen in typing class.

I had a few friends who had made pages on the site. I decided to make one, too! It serves to share that, like any teenager, I was, at that age, desperately trying to fit in with my peers and would quickly involve myself in their activities in any way I could find possible. I was utterly unaware of the scope of my disability at that age and couldn’t understand why I struggled to maintain fulfilling friendships in real life, so the idea of virtually-fitting-in using a digital avatar was especially appealing to me. Unfortunately, because of my age and autism, I was also exceedingly impressionable, and would find that this borderline underground social media / blog platform was mostly unregulated. That’s when it all started getting serious.

I had always been sick, I just didn’t know it. As an infant, I was born with an ongoing infection and couldn’t go home after birth. I had several serious allergies and intolerances. At age six, like I mentioned, my breathing problems began. Soon after I would be diagnosed with migraines and chronic morning sickness (from stomach problems). I was six or seven years old when I was first diagnosed with childhood depression by Christian counselors. My mother told me that I had nothing to be depressed about because I had never known suffering (she was, quite literally, violently incorrect). When I was about seven years old, I would have a three month-long bout with strep throat which was eventually culled by surgery removing my infected tonsils and lymph nodes. Every year I would spend a minimum of six months dysfunctional and sick from various colds and viruses, occasionally requiring hospitalization to get my breathing problems under control.  I missed more than two combined years of school, but still graduated on time despite never getting a chance to make up my lost education. Around ten, I got my first endometriosis period. My so-called period cramps would last for one week before, the week of, and one week following my menstrual period. By this point, I was disabled for 75% of my entire waking life at least—but my predisposition to develop very severe, very long-lasting viral infections would most often cancel out whatever pain-free-days I might otherwise have. I was a completely hopeless human being and my mental health showed this.

The older I got, the worse my health became. My incredibly vicious periods became less predictable in my early teens, and longer. My digestive issues were so pronounced that my stomach was regularly distended and painful. I threw up most mornings before school, so my step mother gave me unrestricted access to PeptoBismol, explaining my dangerous symptoms away as school-anxiety. Around this age, I developed severe skin and sinus allergies to a massive host of proteins, including seemingly all animal proteins. I had a shampoo with egg protein that caused my scalp to flake and itch painfully. I would develop massive welts all across my skin when washing the family dogs. My parents supplemented me with Zyrtec and other baby-problem allergy mediations at which my immune system cathartically laughed and howled. On top of everything else, my walking problem (a usually unnoticeable limp) became apparent when I was about fourteen, and somehow, my family members were allowed to decide for me that corrective shoes would be too unflattering to be worth saving older-me from chronic hip pain. My suffering was genuinely unthinkable, even to the me of today who some would argue is only remotely better than the me of then. I had nothing and nobody in my corner—nobody cared about the fact that I was constantly in pain, constantly suffocating, always covered in hives with raw, itchy skin. I remember feeling as if they were applying a band aid over a burst jugular.

I had to smile and nod. Any time I expressed my medical needs, they were not only invalidated, but I was often criticized for expressing them at all. In my real life, I was a theatrical, dramatic liar who would rather fake her own death than even sit in a room with family members. I was evil—so very, truly evil—the production of a voodoo curse or a gnarly past life—and all I did was pretend to be sick, all to use it for my tiny mastermind plan of laying in bed and doing nothing all day long—the true pinnacle satisfaction of the human boredom that birthed stone tools (this is sarcasm). In my real life, I had absolutely no control over anything that was happening—but I did have one thing; I had google, with a little “g.”

I’m an American woman, and it’s no secret that one of the leading health problems in the USA is obesity. In reality, it’s a hell of a lot more complicated than “obesity,” which itself is a symptom and not the actual problem, in my personal and utterly unqualified opinion, but that’s how the media portrays this phenomenon. So, naturally, when I angrily googled “why the fuck am I always in agony” as a fourteen-and-a-half-year-old, the GPS-localized Google Search feature on my laptop’s browser pointed me to the answer that most locals wanted and expected to hear.

[why the fuck am i always in agony]

“you’re overweight.”

Me? Not possible, I had thought. All of my life, everyone had told me I was too skinny. I remember my weight being a constant conversation in the pediatrician’s office. I googled deeper.

BMI. Hip to waist ratio.

 You  ex-anorexics know how the story goes.

Standing in front of the archaic Victorian-mansion-darkwood-vanity with a construction-grade measuring tape stolen from the garage, I lifted my shirt up and took my measurements. I don’t remember what they were, not that the internet would need to know about a minors waist-to-hip-ratio, but I was satisfied enough to loosen to grips of my rapidly developing eating disorder upon the realization that society had determined the proportion of my stomach to be acceptable. That couldn’t be it, I thought. Whatever was wrong with me was not my weight.

Well, a not even another year would pass of my daily melt-on-the-tongue-allergy meds, my stupid chalky bismuth tablets, and my period cramps that had me sobbing through French class, before I would again refocus my blame for my suffering on the enemy that society said was behind it. The next time I went to evaluate my stomach was right before one of those lovely endometriosis periods, and immediately after eating half a bag of lays potato chips on my couch, with a step brother, as soon as we got home from school. This time, my belly was totally massive, and I didn’t need to measure it to see that.

I thought I knew what to do. I thought I had gained belly fat. I was fourteen, freshly out of a situation legally described as neglect, and I had grown up hating and blaming myself for serious physical ailments that I happened to endure. Every resource I could google said that belly inches are belly fat. I probably never even heard the word “bloat” until a year later. I had no idea that one of the very most common symptoms of endometriosis, or gastroparesis, or hernias, or any one of the number of the things wrong with my abdomen, was abdominal distention. I was fat. The billboards said I was fat. Magazines said I was fat. Posters in the doctor’s office said I was fat. Commercials said I was fat. The news said I was fat. Every single possible resource I was exposed to universally agreed that the cause of misery was being fat and that the solution to every perceivable problem a person might face, from poverty to extortion, might be weight loss. I became determined to get un-fat-- to take my health into my own hands, once and for all.

Google with a little “g” wasn’t doing enough. I would drink extra water, choose whole grains, eat fruits and vegetables and ride my bike as often as I could get away with.  No matter what I did, about 75% of the time, I had some degree of abdominal distention. It changed dramatically throughout the day, leading very-dumb-bless-your-heart-me to believe that I was rapidly gaining and losing weight and fat. Since seemingly nobody ever cared about my unending medical symptoms before, I never even considered bringing this up to my care-givers as a problem, though I was open about my desire to lose belly fat and feel better. One day, I decided to explore the weight loss realm of Tumblr to see if I could find more personal experiences to study, hoping to apply others strategies for weight loss and health to myself. That’s how I fell down the rabbit hole.

Now, I was never one of those pro-ana types with the weight loss groups and the ana-buddies or any of that crap. I was already extremely hard on myself all the time, and I didn’t want or need motivation to lose weight. What piqued my interest were the “tips and tricks” they shared around for how to avoid food and suspicion. Those spheres utterly discredited the conventional weight-loss advice, the food pyramid and any medical knowledge about weight or metabolism. They believed in fairytales—that eating only chocolate would make your body “reject absorbing the chocolate” and that you could throw up enough food to cancel out whatever energy your saliva sent straight to your blood stream.  I was desperate, young, and whole grains weren’t making my endo-belly stay small, so I opted to give these wild ideas a chance. More importantly, I took to the philosophy of self-proclaimed pro-bulimics, and decided to stop using anti-nausea medication. The result of that was that it became unnaturally easy for me to vomit up virtually anything that made it past my esophagus in the first place, and so I did.

Things rapidly got out of control. I lost weight so quickly that everyone around me noticed and cared very suddenly. I lost my period right away, which became the single greatest incentive behind my disordered eating as my chronic pain was dramatically reduced. I was eventually slammed into eating disorder treatment. Minnie Maud, Renfrew—I’ve seen some shit. When you’re diagnosed with an eating disorder as a minor, there are some prerequisite appointments that must occur to assess damage from the disorder. I was diagnosed with my mitral valve prolapse, the supposed explanation to a lifetime of ignored heart palpitations until then, and gastroparesis, which I was told was a temporary side effect from my history of multi-day fasts and vomiting. I also had a host of dental problems and to this day have extremely fragile teeth.

Eventually I found my way into a real-life support group with a bunch of other Tumblr teens. I started a recovery blog and so did most of them. That’s where the story starts to get good. My recovery friends nursed me into my eighteenth birthday. By this point, I had become one of the token-teen-anorexics at my high school and had the disturbing experience of being asked for weight loss advice by my academic peers. I hated this with all of my soul and eventually, so much so, that I wanted to publicly open up about why I had been skinny, why it was bad, and why nobody else should want what I had. I made myself public. I looked up to Amalie Lee and Sarah Frances Young who had similarly bridged the communities in their real lives with the online recovery communities, producing an incredible amount of positive support for themselves whilst also serving to show struggling individuals what’s possible, so I opted to do the same and “put a face to the name.” My plan worked.

The same therapist who supervised my real life support group had been helping me plan a very big move. She’d determined that the problem with my mental health wasn’t that I had been neglected, but that I still actively was being neglected. I needed to be able to be fully responsible for tending to my own needs, or those needs would go on being unmet. I was seventeen when I signed my first lease and was eighteen when I moved 500 miles away from home to a town I’d never been to, in the single greatest escape of my life. My public openness with this experience attracted many people to me, who finally, rather than asking me for weight loss advice, were benefiting from my knowledge on moving out young, finding work, finding shelter and food, and best of all, recovering from disordered eating.

Everything was going great. People would message me for support or resources, I would share it. I bullied a few pro-ana people and launched secret campaigns against various pro-ana spaces on the internet. Somehow, me and all of my friends were those new-age 2015 hippies that don’t mind being broke as long as they’re, like, California-broke, and still eating vegan avocado toast every morning. We were a little subculture of our own, finding our healing through the extremely culturally appropriated words of white male authors who were profiting off our spiritual vulnerability—but it was mutualistic enough that everyone kind of turned out okay, mostly.

I was one of the first flies to drop. My moms death coincided with the terrible worsening of the my endometriosis and PCOS symptoms, long after I had weight-restored. I first shared about it online because I had grown desperate and felt lonely in my circumstance. At the time, I only knew I had endometriosis. My partner immediately became my full time care-taker.

Thanks yet again to the internet, namely Facebook support groups, eventually I got health insurance and got my excision surgery. I was sent off from Dr. Fox with a warning that I probably had more problems going on, and not to blame endometriosis for any ongoing pain, but to seek out other answers until I’ve found them and not be misled. Around the same time, I noticed Amalie posting about her own PCOS—with photos of the same distended belly that I had, that had started it all, maybe for both of us, even. No fucking way.

 Yes, fucking way, indeed. Dr. Fox had already alluded so himself, but seeing it happen in real life was a very unexpected experience for me. I still remember him inferring to me that PCOS correlates with bulimia, so casually that it was almost mean, as to bundle up someone’s complex, perceived-to-be-psychological struggle into a little blood-sugar package. It all went against the accepted modality for eating disorder recovery, which insisted that the phenomenon was purely psychological. I then noticed my other hero, Sarah, sharing about CFS. As it turns out, an abundance of research exists linking chronic illness to disordered eating.  I already had been diagnosed with my endometriosis and the issues I had in childhood, but I had no idea that the experience of chronic illness and disordered eating might be so common.

I became vocal about the observation of the overlap in patient demographics. It still seems like nobody cares much, but I continue to try to raise awareness of the subject because I know one day people will care. People only care about endometriosis excision thanks to anecdote-advocates like myself, but now, they care a hell of a lot more than they did before anecdote-advocates existed.

In 2020, I moved again, back down to the metropolitan area I was born in, but not close to where I grew up. In December of 2020, I first dislocated my shoulder. After a couple of days of walking around in horrible pain, I hesitantly made my way into an urgent care where my x-ray was questioned. I had a dislocation, but absolutely nothing else was wrong, not even bruising, which was extremely unusual. The Urgent Care doctors told me to tell my normal doctor about everything.

My normal doctor then referred me to rheumatology and cardiology.  It all happened faster than anyone could have seen coming—and so fast, specifically, because while I was tangled up in my endometriosis treatment back in 2017, the entire diagnostic criteria for my underlying condition, Ehlers Danlos Syndrome, was professionally altered to make it exquisitely better at locating and diagnosing individuals like myself. I have almost every single known feature associated with the condition. I passed the Beighton score with a 9/9, had been diagnosed with my hernias during endometriosis surgery, had the heart stuff and the skin stuff and even the startling scar stuff that made my doctors demand I see a specialist in my condition before I ever try to conceive.

“You’re so soft!” Was something my friends had been saying to me all my life. I thought they were trying to compliment my choice of moisturizer—I didn’t realize they meant that I literally felt like velvet to them.  

Ehlers Danlos turned out to be responsible for a lot of my experiences with poor body image and food—pretty much whatever endometriosis and PCOS didn’t inspire. As I discovered, things like “walking funny” affect one’s posture, which can cause us to carry ourselves in a way that slouches our guts forward and makes us appear to have a rounder middle than we would if postured correctly. I remember standing in a bathroom with a bunch of girls as a teenager once, and all of us, being toxic south Florida suburb kids, were comparing our bellies. Everyone was stretching and pulling their bellies out and talking about how big they were. Of course, as EDSers know, the belly is upon the stretchiest of our portions, so I shocked even myself when I saw my belly kept going and going as I pulled it away from my waist. Humiliated, I was apparently visibly distraught, because the other little girls immediately began comforting me. “You’re not fat! It’s just skin!” “Yeah, you’re definitely not fat, but you are really stretchy."

(A primary feature of Ehlers Danlos is soft, stretchy skin)

Finally aware of the terms for my innumerable ailments, and many more appointments and diagnoses later, I decided to seek out a more specialized kind of therapy. Back in 2018, I had been diagnosed with OCD whilst grieving the loss of my mother. OCD is commonly considered a neurodiverse condition, meaning that while it most certainly can be mentally debilitating, aspects of it are more neurological than specifically psychological. Rather than working against thoughts and feelings, neurodiverse individuals are working against immutable developmental traits to fit in to a conventional world. I eventually found myself under the care of a doctor who was well informed and established with neurodiverse clients, who explained the state of affairs with neurodiverse psychology and insurance in the United States, with adult diagnosis, and most importantly, with what specifically is wrong with me.

This doctor helped me overcome lifelong learning difficulties and discover my actual identity. Slowly but surely, I have been coming around to opening up about the uniqueness of that entire experience online but sharing about being neurodivergent is a hell of a lot harder than sharing about physical ailments. The longer I endured through my new format of therapy, the easier it was to have conversations about the actual logistics of my conditions and how they work in my head. Why can't I do math? It's too noisy.

Understandably, it can feel very dehumanizing as a patient to have conversations like that with a new therapist or mental healthcare team early on. I eventually learned that, yet again, chronic illness tells a story about our so-called “mental health” but in a way much more important than I had ever dreamed possible in my old ED-recovery-days.

Not only is there a well-established co-occurrence between these “neurodiverse” conditions and the form of chronic illness that I have, but many of the psychological symptoms of said neurodiverse disorders specifically co-occur with relative physical features, such as in the case of TMJ (TMD) and hearing or even attention problems.  It’s all just fascinating. With this knowledge, every detail of my life started to make sense. Why had I been neglected? Hereditary-neurodivergent mothering, firstly, compiled with my own inability to recognize or speak about my physical state or needs with enough detail to mean anything—combined with just the perfect amount of white coat syndrome to make me lie, cheat and fake my own wellness or do anything else to avoid cancelling my plans for a doctors visit. Why was I so good at all of school besides math? A learning disability, attention problems, a total inability to interpret mathematical data when it’s spoken directly to me or drawn at me, an inability to properly decipher the symbolism that has come to be known as numbers. Why did nobody notice? I have been intimidatingly pedantic nearly since birth—reading early, writing early, despite never developing hand coordination superior to that of a four-year-old, and practicing the one and only communication skill I was born with an inclination towards being good at. I would write them all clear out of bounds, with a nerdy, pompous level of self confidence that offended and tickled my instructors and fortunately satisfied those meant to judge my writing. It had been that way for me all along, but somehow, it slipped away from my memory. My ability to sound smart is what got me through elementary and middle school.

I am pedantic and intimidating and usually seem much, much smarter and more in control than I actually am. Whether or not I’m a compulsively-faking antisocial psychopath is still up for debate in my own psyche, but my healthcare team has assured me that, what I am, in fact, is a stereotypically neurodivergent person with some trauma around my previously unmet healthcare needs, and also, having lots of healthcare problems that I very much haven't made peace with having.

I also don't want to have these conditions-- not that anyone ever truly wants something like that—I know that would be very unusual—but the diagnosis and treatment of everything besides endometriosis was somehow even more traumatic to me. My mother, the parent I inherited my wonky body from, of course also had my condition and arguably my neurotype, too. I grew up watching the healthcare system fail her and addict her to needless anxiety medications while ignoring her impending early death. I had no interest in reliving another second of that experience. A big part of my disordered eating had stemmed from that fear—the fear that being fat was the cause of sickness and misery.

Finally, I had gotten all of the answers that have for so long plagued my mind.

Now it’s been well over a year, almost a year and a half since I got diagnosed with the last thing I’ve been diagnosed with that wasn’t a random emergency. I’m still adjusting to life with this newfound understanding of my body and my brain. While some of my conditions have significantly improved, like my endometriosis and the joint-injury involved in my Ehlers Danlos, other aspects, like my ongoing mast cell problems and frequently flaring stomach problems, persist and occasionally worsen.

At the point where all of the diagnoses piled up, I felt extremely vulnerable, especially with sharing on my most public, this-is-my-face platform. This isn’t solely of my own, accord, either, as my still impressionable brain is sensitive to the rising criticism against people who talk about their disabilities or chronic illnesses online. At the same time, I too am able to step back from my pedestal and analyze the real implications behind individuals who might be identified as chronic illness influencers. While most individuals in this demographic are viewed positively, a dangerous amount of controversy surrounds their community. Individuals point out the frequency of grifters and scammers.

In my own time among the environments of Facebook support groups, and in the micro-communities I found by publicizing my own experience with mental and physical illness, I too had noticed a highly disturbing trend. It’s one that brought me all the way back to my beginnings, and one that hopefully will justify this absolutely gargantuan transcript of a post. People were competing. These environments, those focused around various chronic illnesses, fostered a competitiveness between patients. One image specifically struck me; a young, emaciated woman, with a feeding tube, posting a selfie from her hospital bed took me all the way back to Wintergirls. I’m not that sick, I told myself the moment I saw her. What is that sick? What is sick enough?

I never want to be part of that atmosphere. I never want to be viewed as competing or be caught belittling someone else’s anguish to better highlight my own. I am utterly petrified of accusations of hypochondria as I’ve lost some family to that very insistence. At the same time, I am perfectly ordinary— blending in well enough to have an ear or two on me at least, compared to the rural, disfigured Appalachians on the other side of my genetic lottery number. Especially when the common conversation focuses more on grifting and scamming than awareness—who is going to practice blatant, blunt, ugly and unwarranted honesty, besides someone who can’t help themselves?

Fortunately, life has backed me up against the wall yet again. Everything will be okay, this time, for real, and I’ve just convinced myself otherwise out of anxiety that’s real enough to be acknowledgeable.  I am afraid of the impending changes and transitions that my state of being require. I am hesitant to do this, to sit at home and write and write and write, despite knowing there’s not much else I can do to be heard. I realized through my work and college that my experience has permanently defined my perception, and that perception is an inherently wonderful thing. I’ve learned from the experts that diversity is what strengthens a population and is a tremendous part of what makes us human. I don’t have to look or be normal to be meaningful; in fact, just like the back-of-cereal-boxes love to remind children, being unique is a good thing.

Now, I’m focusing on that; I’m exploring the things that make me different. One of them is that I’m sure many of you do not spend the entirety of your pain-stricken day off writing a 5,000+ word article for an insignificantly tiny audience. I’m sure many people haven’t needed to source out sliding-scale healthcare institutions. Plenty of people don’t currently think maybe there’s a cyst on my right ovary again.

Nevertheless, my story is unthinkably common. The only issue is that a lot of people like never get the pen in their hands, literally and figuratively. Genetic and developmental conditions will seriously damage individuals’ prospects without proper early intervention.  I got diagnosed with what I’m hoping is pretty-much-everything by 24.  A lot of people won’t be so lucky, and whenever they go through a major life change, and their bodies and brains fail to bounce back, it’s a total, life-ruining surprise. If not for my own “great escape” and my very much updated family, I probably wouldn’t even be here writing right now. 

One thing that people like me all have in common is that we will spend as much time in front of a computer screen or cellphone screen as we are able to do so, because the low-activity stimulation involved with today’s technology is a dopamine-godsend to a kin like ours. So I know that by sharing, I am able to touch the lives of individuals who may have no idea just how much they have in common with me, or the rest of people like me out here in the world.

The internet is a giant library of information, and the more we engage with it, the more accurate it becomes in meeting our needs (specifically in terms of web crawlers). If someone googling joint pain, with a little “g,” happens upon my story, maybe they’ll be more inclined to make that first appointment or take a leap of faith and make a move or escape their unhealthy home environment. I can’t do anything meaningful to really raise us up for the revolution we deserve-- I mean, I try to donate where I can and I'm a big believer in mutual aid, and I struggle, too-- but I can play my part in practicing honesty and vulnerability, in sharing my information by word of mouth, or in this case, by word-of-eyes.

My life isn’t meant to be an advertisement, and neither is yours. Besides, the best kind of revenge against people who have wronged you is to unashamedly own and love yourself and your story—and you need to discover who you really are to do that.

I’ve been blessed to be able to aid a few people in their personal struggles. I’m by no means some kind of mentor, but simply a fellow ally in our fight together, extending whatever resources and support I am able to offer to those who ask for it (and occasionally to those who don’t!). This realization of my ability to contribute to other peoples self-discovery and growth, simply by sharing my own, has made me realize that sharing might be the single most important thing I can do. Honesty is powerful and openness is not weakness, but a way to build strength. I believe in a world where we should not censor our suffering for the convenience of those around us, nor should we withhold immaterial or literal nourishment from those in need if we can spare it.

I found my truths out thanks to "the community" being honest, open and vulnerable-- and I feel endlessly inclined to do my part in paying it forward.

So that’s that! That’s the history of my oversharing on the internet, which I find fully necessary to explain myself and the subjects I cover because of my own unique brain. If you're anything like me, in just about any way, feel free to reach out as I love connecting with people and learning about the diverse range of experiences people with my conditions have.

[lyreleafblog]

An Introduction...

Wow, is this weird. Hi, internet! I haven't been on Tumblr for 6 years, but I needed a place to share my writing, so here I am!

This page is very under construction at the moment, so thank you for baring with the dust.

Allow me to explain-- I go by Kitty here on the world wide web, and I am an avid writer. I know Tumblr used to love labels back in the day, so maybe that's a good place to start.

I'm part of several different communities. I'm disabled, nerudivergent, queer and optimistic out of spite. Naturally, the subjects of my writing often involve these topics. Professionally, I've worked in food for most of my career and done everything from cooking to managing with some minor PR and social media sprinkled throughout. For the last four or five years of my career, I've focused a lot on teaching, training and coaching in the professional setting. I eventually went on to become a very under-paid public tutor and now am a private tutor as well! I still have a day job, but like every aspirational 1099-er, I hope to one day, well, you know, not. That's part of why I've been sharing my writing more these days.

I live a pretty quiet, easygoing life with my partner and our pets. I am life-long poet, a certified coffee guru, the child of multigenerational rock-hounding, an avid hiker and and a stereotypical Pilates wife. My disabilities might make things inconvenient but I take tremendous pleasure in making people feel ashamed of themselves for underestimating me.

That's a little bit about me! Now, about the blog-- I'll be working on this blog in coming months. You can expect to find a diverse plethora of original content for your consumption including:

Video-Novels (yes, full on, 100k+ word novels)

Spoken Poetry

Written Poetry

Short Stories

Prose

Blog Posts

Recipes

Comedically Quotable Rants

and more!

Eventually, I will also be able to organize the resources I've amassed over my years of volunteering into what will hopefully become a helpful webpage. I was a runaway youth with a big history and I know that things can be damn hard sometimes. I have a smudge of experience with issues pertaining to mental health, physiological health-- especially for AFAB people, poverty and youth issues. That being said, I'm not comfortable engaging with minors (the voting kind, not the drinking kind, all legal adults are fine), so if I suspect you are one, I will ignore you. Good thing that Tumblr is so outdated that young people don't even know it exists anymore.

Fair warning: I am controversial occasionally.

Anyway, that's all I can muster up to write about for now.

Cheers to my future audience!

[lyreleafblog]

credit - more here