February 29, 2024

Realizing I am Queer, Neurodiverse & Disabled at Midlife.


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For 34 years, I engaged with society as a straight-ish, femme-presenting, able-bodied neurotypical woman.

Here’s the twist: I am fully, unquestionably a Queer, disabled, neurodivergent woman.

It just took me around four decades to figure that out, and I’m still re-examining my life in light of this new information, as well as learning more about my epilepsy, sexual orientation, gender presentation, post-traumatic stress disorder (PTSD), and sensory processing disorder (SPD) as I move forward.

It’s like when you realize—Spoiler Alert!—that Bruce Willis’ character in “The Sixth Sense” has been dead the whole time. 

It suddenly recontextualizes the preceding narrative, and everything makes so much sense you can’t help but wonder how you didn’t see it. (Insert facepalm)

I wasn’t dead for 34 years, but I was disassociated and had the unshakable sense that I was trying to unravel the mystery of myself like a detective with a trail of breadcrumbs and a map written in hieroglyphics.

Regardless of how many shows, movies, songs, and fashions are milking peak 80s and 90s nostalgia, it is no easy task to convey how different the pre-millennium universe truly was to those who did not experience it first-hand.

Content is not culture and the cultural landscape would be considered unforgiving by today’s standards. And I say this not with pride but with some measure of sadness.

I’m not proud that I endured a painfully insensitive childhood. I don’t care if it made me tougher; ultimately, what it did was drive a wedge between me and my emotional world and create obstacles to genuine connection between me and the people around me. I do not blame them either. All we can do is the best we can with what we know, and we were all stumbling around in the darkness of lack of information, if not outright misinformation.

I found out I had epilepsy after an emergency brain surgery, and months later I experienced a tonic-clonic, formerly know as a grand mal, seizure when I was 34, meaning after my neurological disorder literally nearly killed me.

Why? Because, like gender identity and sexual orientation and gender presentation, people were only aware of one or at most two options. But there are over 30 types of seizures.

I was born in 1982, and aside from an elite handful of medical professionals, most people only identified a seizure as someone convulsing uncontrollably on the ground while chewing their tongue.

I didn’t “get” epilepsy at 34. I had epilepsy as far back as I can remember, which I can clearly see now that I know what the symptoms are. These types of seizures are not new or trendy or hyperbole just because they were not commonly discussed and a lot of people still aren’t aware of how many ways brain seizures can manifest.

I also didn’t turn queer or soft masc or develop SPD or become neurodivergent at 40 anymore than I developed polycystic ovary syndrome (PCOS) the day I was finally diagnosed. These realities have existed for a long time for me and many others, and there was no dialogue around it and an appalling lack of resources, representation, and information.

I knew I was a “woman loving women” (WLW) from the time I was extremely young but I also understood it wasn’t safe to disclose this information. I saw little to no same sex (let alone poly or multi gendered) relationships in media and as I grew up, the only safe way to be a WLW was to be a femme bisexual, which society approved of under the impression it was further posturing for the male gaze in a “pick me” relationship escalator model.

When I first came out as a lesbian in 2006, I didn’t identify as butch or femme and remained confused and isolated from both lesbian and hetero communities while continuing to femme present unconsciously, for my own survival. I also dated men and married one, but I’m proud that I chose to have two children and that’s the key: choice.

The reality of the culture I grew up in was this:

If you didn’t fit in, it meant something was wrong with you. You typically were bullied, and the end goal was to go to any lengths to conform to society. That was the only way to live happily ever after.

The omnipresent messaging was that the system wasn’t broken: individuals who didn’t slide in easily as cogs in the grandmasters’ machine were.

I was misdiagnosed (and subsequently mis-medicated) with a panic disorder and ADHD in an attempt to “fix” myself to be a high functioning member of capitalist society. I have an acquaintance who practices acute care pediatrics who calls these misdiagnosis “malpractice” in light of what we now know about my neurological condition.

I was bullied, slapped, called “ditz” and “space case” for “spacing out” when I was, in all reality, having focal aware or absence seizures, meaning the electrical impulses in my brain were misfiring through no fault of my own.

That’s the standard each and every human was held to, in my generation and before. Everything was our fault and therefore solely our responsibility. I forced myself to try and fit into heteronormative relationships and if I didn’t or couldn’t it was my fault for upsetting my partner or driving them away. I was slut shamed, mom shamed, and continually trapped in a cycle of blame and shame because that’s what our society runs on when we reject sensitivity.

The alternative is shame—and shame is as powerful a tool as any to elicit silence, productivity, and compliance.

If you were a picky eater, cried because you had seams in your socks, had a meltdown while having your nails cut, experienced sensory overload while shopping in a bright, crowded department store while amped up on soda and candy, or had a meltdown for any reason at all you were a “spoiled brat.” The child was shamed for acting out and, frequently, the parents were shamed for not being harsh disciplinarians who could force their offspring to conform to the protocol of a society that made no space for the mentally ill, the neurodiverse, the queer, the BIPOC, the disabled.

If you didn’t fit into the extremely narrow mold created and sustained by generations of cishet, male, able bodied, white, neurotypical masters of the universe, you were sent to rehabilitation facilities and groups that taught you how to conquer rather then honor your true self.

No, spectrums did not exist. You were:

He or she.

Gay or straight.

Butch or femme.

Visibly disabled or a hypochondriac.

A spoiled brat or a good soldier.

We lived in a segregated world in every oppressive sense of the word.

I grew up in institutions as a ward of the state and this was before trauma-informed care was mainstream practice. So your trauma was treated as run of the mill life experiences in an unjust world, and if you couldn’t pull your bootstraps up and get over it like an inspirational movie of the week, the problem was chalked up to personal character weakness. All of the aforementioned dynamics were founded on misappropriated and unquestioned religious moralism.

If you had a problem, it began and ended with you.

Brain chemistry, intergenerational trauma, cellular memory, behavioral patterns, media, the central nervous system, psychology, science, statistical evidence, capitalism, colonization, vulnerability factors be damned—just get a haircut and get a job!

This is why it took me 42 years to not merely acknowledge but own my sexuality, my gender presentation, my disability, my neurodiversity, and my other health conditions, including my mental health.

During the first three decades of my life, we were not only discouraged from but frequently outright forbidden to feel our feelings, express ourselves, or question the status quo.

The media, pre internet, was strictly censored. Our worlds frequently started and stopped with the neighborhoods we lived in and the five or so television channels and radio stations that aired. Our parents believed that lack of discipline and responsibility were the root of all that ailed us and rarely took responsibility for any role their own behavior and lack of relevant, up-to-date  information may have had on our lives.

It was a hierarchal world run by the patriarchy, and I’d love to end this by saying it’s not that way anymore but I know that’s not the truth.

It’s not that way for me as much because I’m not under anyone’s influence. I’m not living in a facility or under a parent’s or spouse’s roof. But I’m still a member of an archaic society.

I have access to the internet and the library in the palm of my hand. I’ve been able to outsource for a like-minded, open-minded, supportive community and explore my personal options and preferences in order to find my own truth but it’s taken decades to attain this level of self-awareness and autonomy and I have been met with resistance.

I’m happy that younger generations today have more options than all generations prior, but I know there is still an appalling lack of support for diversity, inclusion, and divergence from the old template.

We have made progress and, as always, those who are terrified of progress will do anything to halt it in its tracks and send us reeling backwards to “the dark days,” when they wielded ultimate, unchallenged power.

When Bruce Willis’ character in “The Sixth Sense” realizes he’s been dead the whole time, the look of shock and grief on his face is undeniable. Coming out of a mass induced denial is shocking and saddening, and there is grief when you realize how many times you denied your true self in order to survive your environment.

Maybe some part of me was dead, participating in an alternate narrative that didn’t dare challenge the role I was assigned but never actively consented to.


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