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. 

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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. 

Making Space for Mental Illness

I have anxiety and depression. 

I am also autistic, acutely asthmatic, have a chronic pain condition, and most likely one or more autoimmune conditions. I have learned over the years how to give my body grace for it’s many symptoms. 

I know for instance, that if I wheeze when I stand up, I have to take it easy and avoid chemical triggers, if my fatigue makes me want to cry that I need to rest until it lets up, if I am sensory overwhelmed or unable to speak to withdraw from stimulus and to fill my day with sensory pleasing activities as well as self regulating stims, and if my body is on fire with pain to be still and treat it as best I can.

I have learned through trial and error that trying to bull through these symptoms will only cause my overall health to spiral. There is no use in being in denial, or pushing through unless I have no choice. It only hurts me….and if I am in a self recriminating mindset, it makes me less productive too. 

I have a lot more difficulty being gracious with my self about my anxiety and depression. Once these two show up I tend to fall into a pattern of negative self talk and fighting myself to try and force these feelings away. 

I understand why, my family history of weaponized mental illness plus internalized saneism and ableism that taught me practically from birth how to be ashamed of my feelings, but not how to process or deal with them. 

Here I am, a breath away from 41(i think) and still struggling with how to treat my mental illness with as much grace as I have learned to give the rest of my body/self. I want to change this, I want to lovingly embrace these parts of me that are not inherently wrong, are not defective, which is only my inherent me-ness plus the imprint a lifetime of othering and toxic familial relationships left on that base shape.  A perfectly fine mix of strengths and weaknesses. 

So now I am trying to change that, I want to give my body the grace to work through it’s emotional symptoms as I do it’s “physical” symptoms. I’ll be honest, I don’t really know what that looks like. I’ve never even imagined what it might look like to not struggle under the weight of this internalized saneism and ableism. 

I don’t know…but I think the first step is in letting myself feel my feelings without the internal dialogue telling myself what a useless waste I am for being terrified or depressed all the time. I think for me the first step is allowing these feelings pass over me as another aspect of me. Not for attention, or excuses(because privileged people should never use our mental illness as an excuse for our oppressive behaviour), not to wallow in them self servingly, but because denying them and trying to shout them down is never going to work. 

I feel like there must be a middle road for me between denial and drowning in them.

Because denial has never worked foe me. It’s time to try some semi-radical self acceptance. Hopefully some day, as I am able to work through this, a next step will become clear. 

Hopefully some day, I will be able to breathe a little easier. 

A Midwestern Ghost Story

A Midwestern Ghost Story

I am a ghost in this hospital. Everyone looks away, through me entirely, or shudders in disgust. The cold air wraps around around my spine, whispering sweet negativity. 

Hospitals make me uncomfortable. The same noticeably neurodivergent and obviously gender non-conforming or non passing traits that make me “weird”, awkward, and uncomfortable for random civilians, makes me automatically suspicious to many self proclaimed authority figures, usually including doctors and nurses. Their scowls and scrunched disapproving faces in turn make me feel more anxious and deeply, fundamentally, wrong. I pick, flap, flail, and vocalize nervously to cope, which makes me seem even more questionable, more suspect.  

I make myself as small as possible as I move through these halls, as unremarkable as possible. If given a choice between invisibility and open disgust I choose the former…not everyone is lucky enough to have a choice.

As an adult I have never had a doctor that didn’t obviously dislike me, not even the nerdy cis woman I talked to about Stargate Atlantis and Fringe for twenty minutes. I had thought that perhaps women doctors would be more receptive to my asking questions, to my me-ness, but that hasn’t proven true for me. 

My last GP gritted his teeth and sneered at me any time I asked a question about my own health care. The last time I saw him he “broke up with me” for irreconcilable differences. It was for the best undoubtedly. 

But how can I get good health care when my doctor loathes me? assumes I am drug seeking because my body language doesn’t meet their expectations? because I find eye contact with angry strangers nearly impossible? 

Well, I don’t, and I haven’t, to be totally honest. I just haven’t, and I am not the only one. IBPOC have an even steeper uphill battle to getting health care that actually helps them. They are fighting hundreds of years of dehumanizing and dismissive systemic racism, both generalized and specific to the field of medicine on top of judgement from any other marginalized aspects of their identity. Visibly disabled people, the mentally ill, immigrants, nonchristians, displaced people, those who are chemically dependent, among many others struggle with getting any health care, much less sufficient health care due specifically to the bias of health care providers. 

After a life time of bad experiences, even being in a hospital for visitation makes me feel alien and anxious, self doubting. It takes a moment to work up the bravery to speak to any of the employees. I’m always mildly shocked if they are actually helpful. 

This trip was surprisingly ok. Thank the fates for that little kindness. Next time I’m likely to not be that lucky, many of us in this country won’t be. 

Healcare should not be a privilege

living without chronic pain and illness should not be a privilege 

yet here we are in a world running, most harmfully, the way it was designed, and only really helping those who are both willing and able to play along in a deadly game. 

Happy Anniversary and Thank You

For all your amazing support

Two years ago(almost exactly) I started out on this official writing journey, at the encouragement of my loves, scared to death and sure I would fail. Finally I decided, I didn’t want to be the sort of person who never tried to fulfill their dreams, and being out of options as a chronically ill person who was newly unable to work outside the home, I had to make something happen. I could not sit for the rest of my life dwelling on my misery and hating myself the way I was inclined to. I’d seen in my own family how that ended. I had to try and fulfill the dream.

dreams are hard right? or they wouldn’t be called dreams 

I had two patrons, both part of my chosen family network, 11$. That 11 dollars was the beginning of me remembering my value, of discovering how healing it is to be even a small part of someone else’s healing. 

Truly a soul soothing balm 

So… 

I don’t know how to thank you exactly

when I traveled the wayward flail and chuckle of childhood imagination

and landed, barely on my feet, beside you

arms held out inviting  

into this intergalactic fantasy 

into me and mine 

My heart

and you said yes! 

…you said yes…

thank you

“heat vision” picture of myself , a white demidude, wearing my son, who is black/biracial, in a buckle style baby carrier on my back. Our faces are bright pink, our hair and clothes yellow, and the baby carrier straps, kindle I’m holding, and my glasses are blue indicating the heat everything is emiting. The picture and the heat vision gives the picture a Terminator type feel. On the right hand side there is a vertical bar showing w hat temperature ranges each color represents.

Resisting or Resistance

We call the summer of 1969 the summer of love, at least in part because it was a time of social upheaval and protests, many, many protesting the rampant civil inequality of that era. 

I wonder then if our children’s children will, without understood irony, call this the summer of Freedom. 

The full power of the American propaganda machine smoothly transforming the desperate, powerful, furious fight, flight, and flail of oppressed people pushed to the very edge of society, to the very edge of their own lives by a government and social system working as designed, into a plucky story of American heroism and can do attitude. 

If that happens it will be yet another offensive harmful lie in a long line of offensive lies. Most the people have spoken, and most the people are mildly offended, or primarily offended that they have to see it, that it is out in public. After all, we have become so good at keeping our bloody and racist history behind closed doors and in strained whispers, it hardly seems appropriate. 

But the bones of this country have not changed. It was born a predator and a vulture, and no doubt it will die a predator and a vulture too. 

We white people have a moral duty to fight in every way we can, not just in the ways that are comfortable. Those of us who have privilege need to be using it in every way we can to protect those that don’t have those protections. It is literally the least we can do. 

We must break out of our comfort zone, lay down the weight of individualism and apathy we were raised on, listen to IBPOC who have been leading the charge all along, center marginalized voices, and use every resource we have. Every single one. 

It’s time for my people to get uncomfortable, way fucking past time.