Tag: Autistic

My 100% is Actually My 500%

There is a unique and devastating grief I tend to feel after big days and events as a chronically ill autistic disabled person.

Writing has felt so intimidating to me over the past few years while I navigated a lot of intense life upheavals. But I really miss it – and you all – a lot. It’s meant more than I can say to see people are still visiting the site… There are still a lot of views every day despite my lack of posting. Like a lot a lot. 😳 But in some ways, that’s also added to the pressure I’m putting on myself.

I’d like to try posting more casually, with less pressure on myself to get things “perfect”. Sometimes… good enough really is good enough! If you agree, it would mean a lot if you interact with this post by liking it or leaving a comment. That way I can remind myself that something truly is better than nothing, and that a short or “imperfect” post is still valuable.

Autistically,

Alex 💜

My 100% is Actually My 500%

There is a unique and devastating grief I tend to feel after big days and events.

Since January, my work has been organizing a large-scale, city-wide event and I’ve been responsible for a lot of the behind-the-scenes coordinating and organizing.

This included efforts to make the event the most accessible it’s ever been – including my second year hosting a Sensory Support Space (Let me know if you’re interested in a post about that. I have a lot to say about it!) It’s an event that means a lot to me, and to my intersectional communities.

But inevitably, today I feel that all-consuming grief. And — like I mention in my post Navigating Autistic Grief & Anger — I somehow always manage to forget how much I struggle to navigate grief.

It’s the same grief I felt in college needing to have accommodations to work from the floor when needed. To have campus security bring me to and from classes. To spend 95% of my time trying to just do my best while doctors tried to figure out what was wrong. To have to wait for football players running down the halls to catch the elevator with me because they were late, and I was struggling to stand. Getting invites out and knowing that no – if I want to pass my courses – I literally could not.

It’s growing up undiagnosed and knowing you’re very different from your peers in so many ways, but you don’t know why. It’s the school nurse gaslighting you and calling you a liar when you’re overstimulated and in pain and confused. It’s watching friends get “perfect attendance” rewards when you’re just struggling to get through the day.

There’s a special type of grief when your 100% is actually your 500%.

When you can’t go out and party or celebrate with your coworkers after 6 months of planning together. (To be clear, I’m sure everyone would have welcomed me and tried their absolute best to accommodate me — I was just at the point where I literally was in able of anything other than staring at my ceiling in the dark.) But there’s that grief when you can’t do the post-event bonding to celebrate and hear how everyone’s day went. You can’t blow off steam together.

And you can’t bounce back the next day. You pay for overdoing it in full body pain and nausea and vertigo. And you pay for it for a very, very long time. Like weeks of time.

It’s isolating and lonely and it’s no one’s fault. Not even my body. It’s just doing its best. I’m just doing my best. And that’s the biggest grief.

My Hysterectomy: Grief, Regret, & Joy

Grief, like so many emotions, is an experience that relentlessly evades my expectations no matter the circumstances. It doesn’t matter how many times I try to “practice” a future incident or attempt to troubleshoot how I’m feeling. Grief is stubborn. Grief is creative. Grief is necessary. But goddamn… grief is a bitch.

This summer, I lost so much. In rapid succession, my life began to shatter and splinter outward in sharp, crackling edges. Let’s just say– if I’d been given a bingo card with the events of my life in 2022, I would have bet my existence there wouldn’t be a single winning bingo on it. But here I am– holding a tattered bingo card that’s been stamped so many times the ink has begun to bleed. 

Grief’s gnawing, grating lament has been present for so many months now that I hardly feel it most days. But grief has found a new way to make me hear it again in the most unexpected way. This grief is like the ground after an earthquake, when the earth begins to liquify and water bubbles up through the cracks. This grief is unique, and feels decades old. And I suppose it is…

Grief, Regret, & Joy

In August 2022, after 20 long years, I was finally able to receive a total hysterectomy. I’m a trans nonbinary person with Polycystic Ovarian Syndrome (PCOS) and persistent gender dysphoria, and I have been fighting to receive this medical intervention for two thirds of my life. This victory should make me happy. It does make me happy. Indescribably happy.

But alongside this relief and joy is a dark swirling void in my chest that pulses sharply and shrieks to be heard. This void reminds me of things pushed into cages in the back of my mind.

It reminds me of 20 years of horrific and debilitating agony from large ovarian cysts that ruptured routinely throughout my life from ages 12 through 32. It reminds me of missed classes and days of work. Frantic trips to the ER. Fearful menstrual periods waiting frozen with terror for another bomb to go off inside of me. Invasive tests and stoney-faced unlistening doctors. 

“Alongside this relief and joy is a dark swirling void that pulses sharply and shrieks to be heard.“

This insistent grief paints an uncanny and unwelcomed image of a 12 year old kid blacking out while home alone and waking up to a still-present, gut-wrenching pain that sadly wasn’t just a bad dream.

And more than anything, the black swirling void in my chest stirs and coils into a viper that reminds me that often with grief… comes rage. The viper in my chest spits out echoing reminders of betrayals and failures to protect. Of the hippocratic hypocrisy– “do no harm”. The echoes summon the memories, accompanied by the haunting grief… the rage.

“This shouldn’t happen again. It’s rare. You don’t need to worry.”

An image of a 12 year old terrified to walk down the stairs, scared to somehow set off another bomb inside. 20 years of it happening… again. And again. And again.

“Take these and it’ll stop.”

A just-barely teen cycling through half a dozen hormonal birth control medications, quickly followed by a quick succession of anti-depressants, chronic pain, and intense suicidal ideation.

Lots of pills of all different shapes and sizes and colors

“You don’t know you don’t want kids. You’re not 30 yet. What if you change your mind?”

A child, teen, then young adult begging for help from doctors, insisting that no child– even if it were wanted– is worth this daily dread. This indescribable agony that makes life seem unlivable.

“It’s just part of being a woman.”

A too-young child learning to dissociate so far outside of their body that the pain the body feels is like a flickering candle in a distant galaxy.

Dark galaxy with a faint moon

“Only come to the Emergency room if you’re bleeding through an entire pad.”

A young adult gasping, “I’m fine. This is normal.” while inwardly praying to either black out or die. Anything to escape the all-consuming pain that makes their vision go white.

“I’d trade you if I could.”

A confusing rage and deep, unfathomable sorrow that pools around the viper swirling inside.

Grief, Regret, and Moving Forward

I’m still not sure what to do with the gritty heaviness of this grief. This grief is dripping with poisonous rage and there’s nowhere to place it. No single person to direct it toward, demand answers from. Yet holding it inside grows challenging. How do you coil your rage around a systemic cage? 

This rage is a part of my grief that I cannot lock away. Its molten heat merely melts the lock. I don’t know how to honor this anger. I don’t know how to look back at my past and tell my younger selves that they did everything right. They did nothing wrong. It wasn’t that they didn’t say the right words or do the right things. They tried so damn hard to be heard. They collected countless bruises and traumas, and they kept going anyway. They grew to be a warrior far stronger than many grown adults ever need to be, and far, far too young.

As reproductive rights continue to be challenged throughout the country, I grieve and I rage. Bodily autonomy is already denied despite documented “medical necessity.” Further barriers to medical care seem insurmountable in an already cruel and inhumane system which deliberately and callously silences minority voices.

And echoing in my mind is the question “Who defines ‘necessity’?” This question haunts me through my grief and my rage.

I look back and tell my 12 year old self…

“It was a necessity. It was a necessity for 20 years. It’s time to let yourself feel again. I am so damn proud of you, kiddo.”

Navigating Autistic Grief & Anger

Emotions are often a daunting endeavor for me. I struggle to identify how I am feeling, then struggle to emote the feeling outwardly in a way others interpret correctly. (Or more often, I painstakingly mask it.) I especially struggle to let myself feel and sit with my feelings—particularly grief and anger.

When I think about it, there are actually many reasons why I shy away from both grief and anger.

Intense bodily and sensory experience

These feelings are often accompanied by uncomfortable things like: nausea, dizziness, buzzing electric limbs, stuffy nose and wet face from crying, elevated heart rate, clenched jaw, tensed muscles, etc.

They feel incredibly all-consuming

Both set off a fight/flight/freeze/fawn response in the amygdala, and that sends my brain into a hyper-focus on the “problem” of my emotion, like it’s some sort of math equation I can logic myself out of if I crunch the number just right. (Yikes?!) And it feels like I will never not feel the all-consuming emotions again— like no other emotions exist or will ever exist.

They make me feel out of control

I don’t mean “out of control” like smashing dishes or slamming doors; I mean “not feeling safely in control of my feelings.” I’ve spent so long repressing and locking away “negative” emotions like anger and grief that feeling and expressing them feels so utterly unnatural to me.

But that leads to a vicious, self-damaging cycle. I automatically repress my anger and grief for a whole host of reasons:

  • Masking by default
  • To avoid bringing attention to myself
  • To avoid further conflict or uncertainty
  • To have some amount of control in something (imagined or not)
  • To give myself more time to process at my own pace (or… not process, apparently…)
  • Feeling like an inconvenience or burden for showing them
  • To spare other people’s feelings
  • To not appear selfish when others are also upset (pain comparison)
  • To be a caretaker or support, always to others and rarely for myself
  • Not wanting to have or feel them (avoidant behavior)
  • Thinking I am a terrible person for feeling them
  • Not realizing that I can feel more than one thing at once (and that they can —and often are— contradictory!)
  • Because I often don’t think I deserve the time and space to feel them
  • Thinking that it’s somehow “childish” to feel

“But Alex, what happens to those feelings then?” you may ask. (Let’s pretend you asked. I’m feeling a bit lonely today. How are you?) Well thanks for asking totally and completely unprompted, dear reader.

Until recently, my answer would have been “I just don’t feel them” with a nonchalant shrug and a misguided feeling of pride and strength. But the issue with stuffing all of the anger and grief into boxes and locking them away is that eventually… the box can’t hold it all anymore.

No matter how many locks I add; how many chains, ropes, and weights… anger and grief are not content to remain contained indefinitely. When I don’t allow myself the time and space to feel, these boxes are ultimately stored in my body. In my tensed jaw, tension headaches, scattered thoughts, tight muscles, fluttering stomach and heart. Anxiety, depression, panic, obsessive compulsive tendencies.

Only when I am pushed to the absolute breaking point do those boxes shatter and I feel everything. All of the build up from weeks, months… sometimes years. All at once. Such an irony that some of my only experiences really feeling both grief and anger (and the overwhelming nature of both) are massively amplified by the sheer volume of emotion built up and not yet processed.

Slowly, I am learning.

The lessons I am learning are slow to come. They are inherently unnatural to me, and my neural pathways fight with all they have against veering off course. It feels terrifying to my brain to stray from what “keeps me safe” (faulty defense mechanism). But faint pathways are beginning to glow ever-so-slightly alongside the glowing stubborn hardwired paths.

  • I cannot control my emotions. I may shove them into a box and tuck it away out of sight, but those feelings only fester and poison me from the inside out. “Out of sight”, it turns out, is actually not “out of mind.” The only thing accomplished is delaying and amplifying those feelings for a later date when the box explodes, often in the least opportune time.
  • Not feeling is not necessarily “strength.” Sure, it can be a protective tool and defense mechanism. It can get you through some horrific experiences and allow you to continue onward. Society tries to shame us into being silent and “strong.” But true strength—and true courage— is learning to take that box of scary “negative” emotions down and open it.
  • It’s ok to put feelings into a box short-term. I don’t need to feel all things all the time. I don’t have to be overwhelmed constantly. The difference is that the box needs to be taken back down routinely to look inside until it is familiar and routine.
  • Feelings are not rational. They are not flaws. They are not selfish. They are not negative. They cannot be logic-ed away, calculated out, or erased completely.
    • Anger is there to show us when boundaries have been crossed; when we value ourselves and our needs; when we need an alarm to alert us that we are feeling a mixture of many big, underlying emotions.
    • Grief is there because we care. We love. We lose. We mourn. We hurt. We love again. We hope. But we are not our feelings, and both grief and anger are completely acceptable to feel.
  • Sharing feelings with supports is not a burden. Checking in with friends and family about intense feelings is acceptable. Asking if someone has the space and spoons to help you hold that feeling is invaluable, and so many people want to be there to help you do so.
  • It’s okay to feel big things. Allowing myself to really feel these emotions is going to take time, and I can’t lie… I am still utterly terrified by it. It sets off all alarm bells. It sucks. But it’s also a massive relief. I have steps in place to start cracking those boxes open—just a smidge at a time— to vent the barest wisp of emotion out. I am holding space for myself to fully feel the weight of that box before placing it back on the shelf for another day.

And with practice, maybe I won’t need a box with so many chains.

1: Operating Manual

It sometimes feels like the average person is given a metaphorical operator’s manual at some point in their early socialization. Maybe not a completed manual, but a pretty solid start on one. This manual details the basics of both verbal and non-verbal communication. Where there are gaps, the user naturally picks things up from those around them and the lessons appear in their manual for later reference. I like to think that most of those people are given a Windows operating system manual. It sometimes feels like-not only was I given a Mac manual-it was given to me with whole pages torn out or missing, lines drawn through or fuzzed out, sections written in a different language….

The majority of people seem to be able to refer directly to their manual or learn quickly from others what to add to theirs, pages being organically added to their operating guide with relative ease. It feels like I’ve had to cobble together the missing pages based on social research, observation, and sheer trial and error.

I’ve taped in handwritten pages, crossed out, and rewritten…only to rip out pages and start all over again. I’ve made wild leaps to “normal” behaviors based on what I read in novels or saw on TV or watched in anime. My manual looks like the world’s most scatterbrained, sleep-deprived college freshman used it for note-taking with memos scrawled in the margin, half-erased, and stained with no small amount of tears staining the text.

Over time, my operating manual may look as thick as someone who naturally came built in with an easily created, neat one. But in actuality, my operating manual is a book made through struggle and not-a-little suffering.

While most social users seem to be able to learn from their manual and then put it aside (referring to it only in rare cases such as “What do I say when I need a break from my partner?”), I almost never put mine down. I’m constantly referring to it (for the most part subconsciously), recording results, and grumbling over the inconsistencies and the infuriating lack of any 100% certain, rational pattern in people’s behavior.

No wonder social interaction leaves me so drained. It’s a very rare person indeed that makes me forget about all (ok, MOST) of what I’ve cobbled together into my manual, set it aside, and just BE with them. So rare that I can count on one hand the number of people I can completely stop analyzing (again, mostly) and just interact in whatever way comes to my mind.

It’s exhausting.