Disruption

Disruption

I had such beautiful plans

Three different blog subjects planned

Getting back on the horse 

So to speak

But you know what they say about best laid plans. 
We found out we were going to be moving, sometime in the next month, the day after my second child’s birthday. It was great news but short notice. Short notice is hard when you are two adult disabled people with very limited resources, and four autistic kiddos ages 3-16. 

Short notice is really hard in those cases, which just happened to be out case. Wooooo? Whew. 

So we’ve spent a month cleaning, packing, moving, unpacking, going without, cleaning some more…and we are sorta mostly done, in the short term at least. 
Since we’ve been mostly done I’ve developed a debilitating anxiety flare. So debilitating I can barely move or think for how intense the panic freeze and sound aversion is. This isn’t to surprising, life and routine change is hard for autistic people. The kids are of course adjusting as well, their adjustment is quite a bit screechier than mine.  A tough combination in the best of times but the children and their needs are so important. It can be difficult to balance sometimes as primary caregiver, but it still has to be done. Goodbye spare spoons.

After more or less days long panic attacks I am trying to get this under control as proactively as possible. I’m taking care of myself and trying to re-establish a routine even when my brain is so panic frozen I can barely put two sentences together. This writing may be disjointed as a result.

Thus this free writing ramble. My apologies.

I’ve been feeding my sensory needs, eating, and sleeping…So hopefully next time I sit down to write I will be able to dig into some of those great writing ideas. 

In the mean time I am alive and doing my best. 

I love you and know you are too. We will slog through together. 

Together sounds pretty nice doesn’t it?

Advertisements

Holding Onto That One Last Thread

Holding Onto That One Last Thread

Oh Brother Dear, we sadly fear your presence we have lost

——–

I live here now

I don’t know where here is

The night spirals from my fingertips 

sweet promises and regrets

I am the eye of the storm 

bereft and bloody 

broken open raw

numb

out of sync with this universe 

it’s moving on without you 

relentless

no matter how I scream and tear my hair

no matter how

~~~~

This room feels empty without you though you haven’t been around for awhile. The air is heavier now. it hurts to breathe. i occupy an impossible moment 

dying

betrayed by my continuation

how does one define the edges of a lifetime? chubby baby hands, blue eyes, warm raspy chuckle

————-

A little over a month ago my baby brother died. He died young and he didn’t have to. The system failed him, on multiple levels. Maybe we failed him too. 

that keeps me up at night sometimes
I had to sit with that first sentence for awhile, honestly. A little over a month ago, my baby brother died. 

I haven’t been able to write much, because I haven’t been able to think much. My spoon supply, such as it is, is going to parenting…and pretty much just parenting. 

I’m here, alive, coping. I don’t forsee ever seeing any of my blood family again, short of minor miracles. That’s been coming my whole life, they always made sure I knew I was unwelcome, burdensome. 

obligated. 

I have one paternal cousin who still speaks to me. He’s a sweet guy. I’m thankful for that human connection. He’s been a singularly positive influence on my life, though we live in different states and have much different lives. 

But we’re poor, my paternal relatives are to far away, probably wouldn’t really  understand my identity, and my maternal relatives and I have gone our separate ways. It was, I think mutually beneficial for everyone. 

So here I am, cut off from the people who knew him, my brother, best, and I’m coping. 

I mean, except I’m not really coping at all, I’m parenting and reading fanfiction. In the realms of self medication, fan fiction is almost entirely harmless and that’s good.

 I’m a parent and don’t have the luxury of the self destruction I was on the road to before children. Becoming a parent gave me focus, gave me a reason to strive for something better. I repay the gift they didn’t mean to give me, by maintaining that focus and reason to live…even when it starts feeling a little to nebulous and far away.

but I understand why I am currently hyper fixated on fanfiction. My brain is reading sooo many stories about anxious, sad queer boys because it’s an anxious sad queer boy, and these little happy endings just…alleviate the pain for a moment, as long as I stay submerged. like soothing music or soft fuzzy blankets. it’s.like an emotional stim. brain candy.. 

let me just stay here submerged in Emo Quinten Coldwater and Regal, Gorgeous, Bad ass magnus Bane. 

It’ll be fine. 

probably.

but as a coping mechanism it’s not so great for the concentration. though i don’t know what could possibly be better. I can be slightly checked out or i can be writhing in devastation. those are my current choices. no more. no less. This is the first time I have been able to write about this without falling apart. I’ll call that a good sign…of some sort.

Allistics accuse autistic people of being cold and indifferent in the way we mourn. That darn flat affect. 

In my experience the opposite is true though, we carry loss and hurt so heavily it overloads our whole system, like a fuse that needs flipping after a lightning storm.  

look away. look away. look away

I disentangle slightly so that I don’t burn out entirely.  

but that doesn’t mean i don’t feel it. 

i feel everything.

I’m still emotionally fragile even slightly disentangled, every strong emotional reaction turns into gut wrenching despair and then to more chronic pain flares. I forget sometimes why every single thing makes me feel like my heart has been ripped out. 

oh yeah, because it has been.  

I don’t know what mourning is like for allistic people. I don’t know what mourning looks like for other autistic people. 

This is what mourning looks like for me. 

I’m not there yet-wherever there is

and I don’t know when I will be

but I’m trying and I’m coping and I’ll be ok

more or less

eventually
in the meantime, anybody know any good fan fic? 

Love and Living in Flaresville

Love and Living in Flaresville

I recently had a revelation of sorts.

You see, I struggle, during flares with my self worth. Self Loathing slowly eats at my mental health until I am am emotional sobbing puddle of despair…especially during the long deep winter flares. 

My friends, many of whom are also disabled and/or chronically ill are always quick to assure me that my productivity doesn’t make or break my value which I totally agree with and yet was not helping the emotional hole in my heart space. 

But I think I figured that piece out. 

My mother was always very open about the fact that she had me in order to make sure she had someone to love her no matter what, to take care of her between lovers, and when she was old and alone. This is not a good reason to have a baby, and is certainly not a healthy thing to raise your child up telling them constantly. but tell me she did. She always made it abundantly clear that my reason for drawing breath, was to care for her, and by extension people like her. 

Loving her, loving people, caring for people was one of the only things I ever got positive reinforcement for as a young autistic trans person.  

My mother was a lot of things to me, she did a lot of things she shouldn’t have as a caregiver, but one thing she did, for good or ill, was make me very good at taking care of people. 

Or at least I was.  

*que personal crisis* 

The way that I was able to “earn” a place in peer groups as a young, autistic person who didn’t meet anyone’s gender performance expectations, was through caregiving. They were willing to tolerate my neurodiversity, only when I had performed that role sufficiently.…or so it seemed to me. 

Not every relationship I’ve ever had has been that dynamic of course. I’m certainly not a victim, and have made plenty of my own mistakes over the years. I spent years in a little soft boy weaponized sadness toxic entitlement smog. It did not look good on me. 

But it was enough of a pattern for my baby autistic brain to imprint on that mold, to develop expectations of myself as an especially effective caregiver. 

The trouble comes in over the last couple years, as I have increasingly become unable to take care of myself, much less anyone else. Every single spoon I have, and more than a few I do not have, go towards navigating a massive amount of pain, new symptoms, fatigue, executive dysfunction, severe depression, and did mention pain? As well as caring for my children, trying to work as much as possible so my family can hopefully some day not be in constant financial crisis, and hopefully not being an emotional drain to the people I love. 

Especially during flare season, a combination of autistic burnout, anxiety, fatigue, and shame related to my inability to reach out or properly or actively reciprocate social interaction on any level adds to my physical inability to leave the house making a deep isolation soup I have trouble escaping. 

I get caught in a feedback loop, when I so desperately need human companionship in which I don’t feel like I deserve to ask for the emotional labor and support of others, when I know my ability to reciprocate that emotional labor and support will be spotty at best for many months out of every year. How can I ask people to do for me, what I am probably incapable of doing for them, most times? 

The process of figuring out who it is appropriate for me to ask for emotional support and labor from can be days or even weeks long. Most of my friends are also disabled and/or chronically ill and are similarly struggling, especially in the winter months. I can’t put my never ending emotional suck on them. Then the educating people on aspects of my family’s experience can be moee draining than help so while I deeply appreciate the offer when I need it most I am unlikely to be able to reach out to an ally. Then many  of my friends who share my identities and would get my experience are also marginalized in ways I am not, I am not entitled to their emotional labor, they have heavy enough existence dealing with this oppressive shit storm world, they categorically do not need my despair added to that. 

even when people offer their support, if I don’t talk to that person regularly, it is nearly impossible for me to break routine or initiate a new routine to establish contact, or to ask for support that I am extremely likely to not be able to reciprocate unless they ask in turn..if I can at all. Then the shame spiral of not being able to do a simple thing, blaming myself for feeling isolated, when people have offered their support, then finally the negative self talk and self loathing. Feeling desperately emotional need, but absolutely no room or ability to ask for help.  

I was put on this earth to take care of people, and I know that is unhealthy, but relationships of any dynamic need to be reciprocal, which is something I am deeply unable to provide 6-10 months out of the year. 

I probably need to build new social templates but have been in autistic burn out for so long, battling deep fatigue, borrowing against far flung future spoons to get through days, that doing so seems impossible. 

Though I know I need to, I don’t know how to rebuild me from here. 

Hopefully this will be the first step, the planted seed that leads to blooms of self understanding, self acceptance…and dare I hope for self love? 

Winter Update

Winter Update

​The holiday season is deep upon us, and the solstice has just passed meaning, the sun and accompanying warmth are slowly on their way back. 

I try to remember that from the depths of my winter flare.

Memories of last year exist in a haze. But still I feel a need to quantify my experiences. 

Last year I was in a daze by this time, major brain fog, unavoidable nap attacks, sudden bouts of complete immobility, multiple days long migraines, and often extreme pain in my joints left me half conscious and very out of contact with the rest of the world. 

This year I have cut out most grains and dairy from my diet and started a food log to track what I eat and figure out which things I’m reacting to most. I am learning to try and stay calm and even since I have reactions to my own body’s adrenaline. I joke that I am the world’s most delicate hulk, I wouldn’t like it when I’m angry (or any other strong emotion for that matter)

I have also added kratom, turmeric, l-theanine, and quercetin, to my regular treatments. As well as getting a pill sorter so that I am more able to keep up with my otc antihistamines, long term antacids, vitamins, and supplements that help with my acute asthma, depression, anxiety, and MCAS. 

So this year my flare feels quite different, maybe it is the medicine, or maybe it is a coincidence, I don’t know.

This year there have been quite a lot more joint partial dislocation, or maybe I am just more aware of it happening. This year my brain fog has shifted from slower processing and confusion, to being extremely forgetful. I have difficulty building any short term memories, and seem to also have difficulty accessing longer term memories. I have incorporated tools, like my kindles and Evernote app, to help me reduce my frustration with my low level internal memory. 

My fatigue has also changed a bit, it’s less often that I get the sort of deep fatigue in which i feel like my body is going to dissolve, failing to maintain its form from lack of energy. Instead it is cold waves of fatigue that way me down and eat at my determination. I’ve learned that if i push in this state, I will end up in that first state. I try not to. 

My pain this year, even with pain control has gotten much higher, over all body pain, burning skin histamine reactions, subluxated joints, constant deep joint pain, and periodic headaches that nothing stops, all accumulate to a lot of painful misery. Pain so bad that my brain echolalias begging the universe to make it stop, that makes me cranky and impatient on the best of days. pain that seems to heighten my all ready finely tuned senses, until casual physical contact is painful. My clothes hurt me, my entire human interface has pain anywhere it interacts with this plane of existence, impossible to escape. 

Whether it is an individual symptom, or a part of the pain and fatigue, I don’t know for sure but  seemingly higher pain levels have resulted in a months long battle with deep immobilizing depression, despair, communication inability,  and intrusive thoughts. I am safe, but miserable, learning how to treat and stave that off so that it doesn’t swallow me whole. 

There are at least 2 more months until it warms up, possibly three depending on how this winter goes. I try not to be demoralized by that. I am feeling a little better for now. But in the winter, I can not count on that to last. The next illness, stressful life situation, storm, cold snap, or anything really, could have me sliding right back into flare land. 
But for now, I’m feeling a bit better. I am able to write a little. 

Today I am going to switch the rat babies to a larger cage and hopefully tomorrow I will have the strength to work on laundry sorting. One day at a time. One moment at a time if needs be. 

Thank you for bearing with me. i love you and appreciate you. 

Flare

My pain flares start in the base of my spine, in the secret spaces where my pelvis, hips, and spine meet. To many joints in one relatively small space I guess.

Then it spreads down my legs, through the muscle tissue there, to my knees, and also up over my mid back to my shoulders and neck. 

The next to be taken are my upper arms, wrists, ankles, and feet. 

My hands get weak and swell earlier but throb with pain last. My individual fingers and over all skin are usually the last part of my body to join the burning. 

A cold heat washes through my muscles in waves, feeling like the jolt of adrenaline you feel when you are scared or embarrassed, only instead of nervous energy, it only brings pain. At first it is only a faint, warm, wave and is one of the first signs of an impending flare beyond my daily pain. It inevitably grows with the flare until is a cold, hot, implacable wave of wet, muddy, fatigue dragging me down into the depths of myself. 

Eventually the burning pain and the cold, muddy, fatigue completely consume me, leaving me at best half conscious. Half conscious, incapable of moving, barely capable of thought, trapped in my experience of pain, looping. 

In this phase, it feels like the energy is being sucked out of me violently, like holding my cells together will become to much and that I might die from the fatigue. I am a cellphone with 3% battery left, struggling to even keep the screen on. 

You can’t die from fatigue can you? I try comforting myself…but it feels like I am dying so it drags on and on. 

With the fatigue comes an ever increasing weakness and lack of coordination, first i can’t open jars, and need my cane more often. As my body seems to slowly be transmorgifying to jello or gravy, I get more and more weak. I fall more often, typo more, eventually holding my device for more than a few moments or at all, becomes impossible. My hands are weak, swollen, and floppy, like two half dead fish. I can do nothing, only useing them to push away or possibly, together to flappily leverage things toward me. Mostly I lay impossibly still in the end, even when as conscious as possible during that time, watching tv and marshalling spoons for child care until my nesting partner gets home so that i can lay lost in fatigue, a Herculean effort. Impossible but achieved. 

My lungs get more and more reactive and weak right along with the rest of me. My lungs carry a burning, raw, stabbing pain, a thick congested wooly feeling, and a constant slight lack of oxygen. Inhalers, antihistamines, and nebulizers are constantly by my side, as easily accessible as possible.

The crying might be the worst part though, something going on in there changes my brain chemistry, with the flare comes despair, self loathing, disgust, abrupt surprise intense crying jags for “no reason” any time my body recoups enough to be capable of even making tears. In the depths of the flare I am often sobbing or even screaming internally…but entirely unable to move. My heart feels as if it is melting away, depression consumes me. 

“Did you have a nice nap?” I’m asked. 

 “no” I say, “that wasn’t a nap.” to brain fogged and fatigued to even explain what it really was. Relieved that for now at least, I can at least speak and move weakly, communicate with my family. 

Knowing full well that it will always be back. 

On the Nature of Love

I don’t talk to often about ethical non-monogamy, primarily because I think there are already so many people having those discussions with much more important perspectives, including the infinite Michón Neal, and deeply gifted Milton Goosby who is always working hard to be a better human, and shares that process with his readers. 

But today I want to talk about something tangentially related to polya, and that is how I experience love. I recently wrote an article about the ways I don’t experience love as an aromantic, nebularomantic autistic person, but that conversation isn’t entirely complete until I talk about the ways I do experience love.  

Because I have difficulty labeling and differentiating between types of love, non-hierarchical polya or relationship socio-anarchy, which to me is concerned with the overall well-being of the group or network with all parts being equally beloved, important, and relevant, is the relationship structure I thrive most in. 

There have been four children born of my body, several of my partners of any definition or title have children as well who will always be family to me, a nebulous network of beloved little buddies. The duty I hold to protect and support the small people in my life, is worth mentioning, and worth mentioning first. Kids aren’t just baggage and burdens. don’t be that person.

ok, So let’s talk about love! 

Just to remind everyone as we get into this I’m autistic but I’m not all autistic people. I’m aromantic but I’m not all aromantic people, I’m nebularomantic but I am not every nebularomantic person. Got it? great, let’s go. 

The way that I love people feels expansive like a galaxy, there are points of burning stars, clouds, an infinity of life and light but it has no rigidity, no defined end or beginning. 

As a small child my mother would try to trick me into going to sleep by telling me to visualize the entire universe and then coming to the end of it. I was supposed to basically self meditate on stars I guess, it was the 70’s after all, but what ended up happening is I would become increasingly concerned about the fact that I could not visualize any defined ending to the universe, what was there a giant wall? a fence? what was on the others side of the wall then? what could possibly be there but more universe? 

That is my fundamental relationship to love these days, the way I always have loved and never had words for. There are no defined lines that I can discern. What could possibly be on the other side of my love for a person but more love?  

When people ask me how many parners I have I don’t even know what to say. Some relationships obviously count, people I have talked to about our dynamics and with whom I spend one on one relationship building time with either online or in flesh space, but I also have many, especially autistic friends, my autiloves, whom I love extremely passionately. Where do I draw the arbitrary line in who to count? how often we talk? what we talk about? how they potentially feel about me? None of that makes any sense to me as an autistic person. I don’t want to conscript anyone into a relationship they aren’t interested in, I don’t need reciprocity to love them. But the love is no less real for lack of an allistic approved label. 

My autiloves especially can be difficult for me to define or explain. Sometimes with other autistic people I can have an intense synergy, a spiritual vibrational synching of energies, if you will, that feels to me very similar to what people call soul mates, with none of the requirements, goal posts, or definitions. These folks I may not talk to often since neither of us have allistic social templates or ingrained rules. The combined quiet of two neurodivergent brains just trying to swim the seas of life may prevent socially expected constant contact, but that love is still deep, refreshing, growing, important love.

But what about straightforward platonic love? Well I don’t know really how to specify that, but I can tell you I have friends I love very dearly who more or less fall into a socially accepted category of “platonic” but those relationships are no less important to me, my affection for them no less important because of their friendship status. 

 My heart and mind aren’t hung on my genitals. My care for you does not depend on you being romantically involved with me. I’m happy to love people for their peoplehood, from afar or close up. I don’t know how to divy people into polite little categories. 

So for those of you I love, thank you for being you. 

For those of you who love me, thank you for giving me room to be me. 

For those of you who hold me, literally or figuratively, when I am lost in the sea of my fears and depressions, I owe you my life and that is no exaggeration.  

If you read this and are wondering, did he mean me just then? yes I meant you, you silly beautiful you. I love you too, in all your ways of being you. 

On Being Aromantic

In a Romance focused culture

As a teenager I found friendship and romance extremely confusing. I always seemed to love my friends to much, and found romantic relationships baffling and nerve wracking. Though I couldn’t figure out quite how, I seemed to always be doing things wrong. Which my friends and lovers were more than willing to criticize me for while never explaining in a way that I could understand, what they felt I should be doing instead.*

As I entered my twenties I knew I was different than the people around me, in more ways than one, but one reoccurring way was more subtle and seemed to have to do with the fundamental way I related to other humans. I told people I was more concerned with honesty then fidelity in romantic relationships, while harboring sad ill fated romantic feelings towards my closest friends. I was confused a lot, and tried to communicate my reality, but  usually we had no language in common. It wasn’t enough, relationships sheared away from each other. I was reactive, heartbroken, and self loathing.

By my thirties I’d made a bit more progress in understanding myself, I could explain that I loved everyone a little, my friends I loved a lot, and my lovers were like sacred beloved friends. It seemed like enough explanation, and yet over and over again relationship after relationship both romantic and platonic ended with mutually hurt feelings and confused expectations.

As I found language to describe this reality, it was a big part in me learning self love and acceptance. Maybe I wasn’t broken, maybe I wasn’t a toxic flake. Maybe, maybe I just loved differently.

So that more or less brings me to today. I have found language now to explain my ways of relating to people. I like nebularomantic** but most neurotypical people don’t understand it, and it explains the why but not the how.

For that, I use greyromantic or aromantic. I frankly have such a tenuous grasp on allistic, romantic parameters around relationships, that I’m not even sure which better defines me. I love incredibly deeply, but it all feels more or less the same to me, besides intensity, no matter the focus of that love. Is that no romantic love or is it that i can’t tell the difference? I just don’t know.

I can say that friendship is the dynamic that is the most important to me, the most sacred to me. This has lead to a couple different unfortunate repeating situations.

Friends whom fell in love with me at least in part because of the intensity of my “platonic” love for them, but were then hurt when I was unable to meet their romantic partner needs. I was ultimately also hurt that they didn’t want to be my sacred friend anymore, or at all.

Partners who loved the way I loved people as a friend but needed a solo emotional focus on them to feel held and loved. Something I could never possibly give someone without cutting off all other friendship, because all affection and love feels the same to me, which inevitably leads to both of us feeling alienated and hurt. (this is not about sex, I can and have been successfully monogamous.

Or conversely romantic relationships in which my hazy boundaries between the two relationship types, and their firm binary definition left a muddled hurt on both sides.

A repeat scenario in which I offer someone my love, focused, because I care so much about them, on my friendship, my knowing, embracing, and accepting of their selfhood, and wishing for a deeper more human connection. Which upon receiving, they rejected heartbroken because for them friendship was a consolation prize if romance was the goal.

I honestly still don’t know how to navigate these waters without hurt, so mostly I don’t. I have found my most fulfilling loverships and friendships have been with other autistic people, or those whom at least have a deep understanding of aromantic identities and an anti-hierarchical polyamorous approach to building loves and connection. They may not speak my love language but they can read it, and I theirs.

This has lead to me coming up with some language to explain these deep, intense, but often difficult to define connections between myself and other autistic people.

Autilove- a relationship in which one or both parties are autistic, the nature of the connection is intense but difficult to label, at least in part due to the autistic people’s way of interfacing with other humans, as autistic people, and eschewing or total lack of comprehension of standard relationship model tiers.

Autilover- an autistic friend/lover in which our autistic energy is extremely in synch, we may have a specific, intense emotional connection that defies traditional allistic/romantic relationship definition boundaries and is not easily or accurately defined simply as friend.

Nebulasexual- (this is in part borrowed from nebularomantic which is a blending of labels that is common and accepted in queer culture, as I understand allistic queer culture anyway.) Nebualsexual is when all aspects of one’s sexuality and sexual nature is influenced by their neurodivergency. There are other words for this more or less already, but none so far resonate with me as much as Nebulasexual.

I’m a mother fucking Galaxy.

These days when people ask me about my relationships, I’m at a genuine loss, some people I know are definitely included, but what about my beloved friends? what about the people I only see once a month but feel like coming home? what about the people i talk to online whom I share emotional labor with when we have the spoons?

How do I define these relationships? Do I have to define these relationships? How do we build these connections in ways that are respectful to all parties?

Is it Possible to bridge the gap between Aromantic and Romantic on a personal level?

All I know for sure is that I love you.

and that matters.

~~~~
*I was by no means a victim, nor am I claiming perfection. I’ve made many mistakes in how I handled interpersonal relationships in my days, and am sure I will make many more no matter how hard I try. I can only hope I keep learning from each mistake.

.

**definition: being unable to or having a hard time distinguishing romantic attraction from platonic attraction, specifically due to ones neurodivergency. Derived from nebulous, a Latin word for clouded or unclear.


 Learn more about aromantic relationships in polyamory via Michon Neal’s many writings and creations, both fictional and real world. Ze is leading the charge in making space for aromantic multiply marginalized people. Ze is someone to pay attention to.