Perpetually Spoon Deficient

or, it’s more than just limited energy 

I have been living with negative spoons for so long now, I barely remember what it is like to have them.* 
I have been so exhausted and overwhelmed for so long, the tax accumulating in myriad ways, until eventually I’ve gone so far past a straightforward shortage of spoons, that as the spoon deficits stack up, as each new thing drains me further, I end up with zero total spoons. Which basically means I have to borrow against future spoons just to survive, to take care of my kids, to feed myself. 

When you have to balance future health, current health, and life reality because they can not all exist in the same space at the same time, something has to give. I’m still alive, I have shit to do so something has to give. 

So I keep borrowing future spoons, because I have no other choice, knowing full well that I am only digging myself a deeper and deeper pit to crawl out of, if indeed I am ever able to rest enough to start recovering. Which always seems questionable when I am in the thick of it. How can I ever know if I will be able to conserve enough energy to ever get back to just breaking even when anything or everything tears me down even more. 

even when I have more spoons, they can be stacked or tied up for long periods of time. 

If I start out with 15 spoons a day I struggle to not overtax myself by overdoing it but is workable, barely. Then one of my chronic illnesses flare, which takes away five spoons a day. So now I am down to ten spoons a day, can I manage to do less daily? maybe. Then an increase in life stress and increased financial stress decreases my spoons by another five spoons. Now I am at a dire five spoons a day. I have spent months and months in which I could only do one single thing a day, no matter how seemingly small or inconsequential to most. One single thing a day outside of child care and feeding myself enough.  Any life emergency means I will have to borrow against future spoons…and something will happen. Crisis tend to pop up when you are poor, over exhaustion is inevitable when something as small as a toddler having a bad day or a night or two of insomnia will/can/has put me out of balance and extremely vulnerable for increased spoon deficit. At that point any tiny little thing has to be borrowed future spoons. Then slowly that deficit grows, each thing that comes up causing a deeper and deeper deficit. Eventually even daily life stuff has to be borrowed  for. The larger the deficit, the longer it will take me to recuperate; if I can get to a place where recovering spoons is even possible. When my health gets relatively (for me) better, an extra five spoons a day is helpful but doesn’t come close to covering the deficit even if a bad health flare was what initiated the downward spiral in the first place. 

My spoon balance looks like the national debt at this point. 

Hopefully I can get to a plateau soon so that I may in theory, if life ever decides to give us a break, maybe I can start that recuperation cycle again. 

one can only hope

Spoon Theory was created by Christine Miserandino

Leaning Towards Overwhelmed

or Coping with Small Changes as an Autistic Person at the End of My Proverbial Rope.  

That’s me in the corner. That’s me in the spotlight. losing my religion. trying to keep up with you…and I don’t know if i can do it. oh no I’ve said to much. I haven’t said enough.

R.e.m. lyrics, a comforting internal echolalia i have had since I was a teen, when I am feeling adrift in the universe.

I thought that I heard you laughing. I thought that I heard you sing. I think I thought I saw you try. 

I’ve been in various degrees of Autistic burn out for months, a result of the standard complexity of being disabled, broke, and in this world I suppose. Stress, the sort of stress you have to negotiate with on a daily basis just to get from one end of it, to the other. But it’s fine, it’s just life. I say that a lot. it’s just life. What else is there to say?

I have been plugging along like this for awhile now…and then school got out which is a major schedule change that has just about everyone in the house out of sorts. On top of all that the weather changed pretty abruptly. Heat and humidity working together to give everything an apparent damp, sticky film. My pores feel water logged. I feel water logged. 

The heat also means the loss of several sensory requirements. Oh you sleep under two fuzzy blankets, one quilt, and hate drafts? To bad because now you are going to lay in front of a fan all night, sweating, and being acutely aware of the movement of every single hair on your body. At three or four in the morning you may dramatically whisper “this is hell” to no one in particular. 

Then there is day time, heat is hot for everyone but probably not everyone has to navigate the heat with pre-existing practically non-negotiable sensory requirements…like shorts which have to be super soft, but not too hot, or too lightweight because that just feels off putting, but also not too short because my skin thinks it chafes if I sit around bare ass on things no matter how soft they are…..also my shoulders probably have to be covered unless it is just ridiculously hot, airflow on that skin is extremely abrasive. Compromise in these clothing requirements, while possible to avoid dangerous levels of over heating, leave me out of sorts and on edge.

Don’t even get me started on shoes…most sandals or flip flops are unacceptable for a list of sensory reasons I will not bore you with …even low tops are incredibly uncomfortable unless they are low enough to not touch my ankle at all while still holding my foot firmly…but high tops are so hot. UGH! 

These things are always extra annoying for me to get used to, but this year because of the preexisting stress and burn out it has become a small private but utterly exhausting ordeal. For the last week almost every spare ounce of energy I have (and a few I don’t), has been devoted to just getting used to the factual sensory truth of summer time. It’s exhausting, I’m ready for fall and squishy sweaters already.  

Also many members of my family, including my toddlers, have sensory sensitivities and difficulty acclimating to new routines and sensations. My toddlers and one of my teens in particular are having trouble sleeping, are wound up, and cranky over the changes as well. It is a given that it is a parent’s job to ease that transition and assist our children re-acclimate as well as we can. I do so gladly, it’s part of parenting.

 In the mean time I am getting little sleep and have very little down time….of course when do the lactational parents of toddlers have down time? I’ll have more space and independence as they grow and need more space and independence, which is all as it should be. I gladly expend the emotional energy, though loving them and appreciating them still can not unspend the emotional energy parenting sometimes or always costs. Parenting, even on the best days, adds a layer of complexity to everything. Thank goodness. Things would be so boring here without our small people. 

This is just one example of how stressors can accumulate for autistic folks in specific ways that can result in overload or meltdown at things that may seem small to an outsider…or how coping through change can swiftly become an all encompassing task that makes it impossible to do other things we typically do. 

For myself, I am slowly adjusting to this new summer situation, trying to remember to take care of myself, and to give myself time to adjust with some personal forgiveness for needing the time.  Sometimes it is easier for me to remember my kids or partners may need time and patience sometimes, than that I do as well. So here I am, I was able to write this even through a fair amount of brain fog and autistic burn out, and that is a great start for me. Hopefully in the next day or two I will be re-acclimated enough to be able to add other things back into my routine beyond bare survival and caring for children. 

One can hope…as long as there aren’t any other changes on the horizon. *wry laugh*

On Defining Self

#30daysofpride: day 9: What subculture do you belong to?*

I have never really fit well into a specific group. In high school I hung out with the punks and stoners but didn’t consider myself a punk or a stoner. I hung out with the academic kids but didn’t keep my grades up at all, and over the years that lack of ease in a specific social group has carried over. 

I feel some connection to geek culture, to autistic communities, to non-binary communities, to the disabled community, to the chronic illness community, to transgender communities, to parenting communities, activist communities, multi sexual communities, kink communities, ethical non monogamy communities, art communities, fiber arts communities, literary communities, birth communities, and academic communities. But none of these sub-cultures explain me so thoroughly to leave it at that, to feel comfortable summing myself up as just this one specific thing. Just like everything in this world, each one of those sub groups has problems that need addressed or dealt with. 

In reality, just like anyone else I am not one thing, I am many things, I am none of them. I am myself. I am the sum of all my histories and all my futures yet to come. 

But I really like Dr Who, so there is that. 
*the original question used the word tribe, which is problematic for many reasons. Non indigenous people should not use the word tribe when we mean village or subculture, read more about some of the problems with that word here.

My Heart, My Heart

#30daysofpride: day 8: Who is your greatest supporter?

This might be the easiest question to answer so far. The most supportive person in my life is my nesting partner. No one in my life time has been so lovingly supportive and radically embracing of all that I am.

Before I met him I was certain that I would be fundamentally alone for the rest of my life. I joked that I was not fit for human consumption. It seemed impossible to ever meet a person who understood all the ways I never quite fit in. This person has renewed my faith in the power of human connection. Even now, years later, I am daily thankful for his presence in my life. It is better for knowing him. Even when things get stressful or strained, the complexity of living this life, when one of us mess up…I never forget how powerfully thankful I am to have met him, to be in this life with him. 

I also have two long distance lovers, queerplatonic-ish or romantic best friends who have always been as supportive as they have been able to be, and they deserve a mention as well. 

As well as a network of friends across the very world who help me in every or any way they can. I try to return the support and love any time and any way I am able. I hope I’m a decent friend, even with all my different ways of being. 

I am eternally thankful for each one of these spectacular people, and my life as it intertwines with theirs. 

~~~~~~~~~~~

My love is unbound 

rooted in stars

woven into the very fabric of our universe 

my love feathers out through the galaxy

sun and strength and fingertips 

I love you eternally 

rebirth and death and struggle

I love you ferociously 

sweet whispers 

sweet dreams

Sweet, delicious, something 

tucked between you and me

sacred

my love, my sweet

Queer Identity From Outside the Queer Aesthetic

#30daysofpride: day 7: Going off book

Today I want to talk about being queer when you don’t fit into the accepted idea of what queerness should look like. 

To begin with I want to step away from the idea that queer culture or queer people are beyond reproach, or that our attractions or social politics exist in a vaccum. We do not, our subculture is just as rife with problematic aspects and oppressions as mainstream culture. As such the expected and accepted visuals that embody queerness are inherently just as problematic and othering as they are in broader mainstream heterosexual colonized white culture.* 

Now that I have touched on that, I want to turn back to something a bit more reflective on my own personal experience. 

When most of us think of or talk about mainstream queer aesthetic what do we mean? Typically within mainstream white american culture queerness is expected to be young, white, thin, abled, neurotypical, cute/sexy/attractive, androgynous, stylish, fun/funny, and hip….however that may be defined at the time. 

So what happens when we actual flesh and blood queers don’t fit that stereotype? We are rendered invisible. 

That invisibility can be complex and is experienced most aggressively, most violently by PoC, and especially multiply marginalized black queer and trans folks. With a huge portion of that violence focused on black trans women and femmes.  

The invisibility, othering, and dismissal that I personally experience starts because I am not young, thin, neurotypical, or able bodied.  

Our local gay and lesbian center, which has a wide range of support groups, is small and extremely smokey from years of second hand smoke. I can’t really go in there without giving myself an asthma attack…so i end up shrugging it off like everything else in life. Most the local community is centered around bars or kids. Bars are also outside of my abilities at this point…and in a different way play groups are as well. Movies and coffee shops are about all my tired body can handle…and even then I am likely to have to cancel.

Because my health so often reacts poorly to exposure to anything and everything out in the world, I’ve developed anxiety about leaving the house, anxiety about negatively impacting my health when I have no easy access to doctors or more medication, when an ER trip would be at least several hundred more dollars in debt. No body wants a friend or lover that can rarely leave the house. This means I carry my invisibility even more heavily. 

Because chronic illness has swept away my body’s assertive swagger, because it has swallowed whole my ability to breathe and bind at the same time…

because my body is to round, soft, and old to be seen as queer, androgynous, or masculine…

because I can’t afford and don’t particularly want a flashy turquoise undercut, geeky bow ties, a universe of button up shirts and sweater vests. It is a fine style, it reminds me of my childhood actually…but preppy geek chic or conversely Desperately Seeking Susan meets Morrissey wide brim hats and suspenders are just not my personal style. (honestly I’m not sure that there is much available right now that is my style but even if there is, I can’t afford it)

because I do not “pass” as male and have a cis male nesting partner who also doesn’t fit the queer aesthetic stereotype…

Because I have children with that nesting partner, whom I grew and nurtured inside my body…

Because my Nonbinary partners are to far away away to touch…

because I am ethically non monogamous…

My experience is often dismissed as heterosexual (or having passing privilege within the cis gay community), an assumption that inherently misgenders me. The cis gaze deciding that because they think I look like a cisgender heterosexual woman to them, that my experience must be that of a cisgender heterosexual woman.**  

 I am told to be greatful for being misgendered…and I do appreciate that I by no means have it the worst. There is so much work to be done, I need to do my part as well to help my more vulnerable trans family live in a world that wants them dead or decimated. 

But I am not a woman, my experience is not a woman’s experience, full stop. My experience has not ever been and never will be the experience of a woman. Because I am not a woman. Being perceived as a cis het woman not only directly misgenders me because I don’t fit that stereotype, it also means I am denied my own community in many ways…repeatedly…exhaustingly. Perpetually outsider, I am further isolated. withdrawn. further stressed and depressed. 

humans were not meant to live alone, without community 

But I don’t pass the rigorous testing I don’t guess. 

I don’t pass. 

Because I don’t pass or fit that stereotype I am subjected to constant microaggressions from people who don’t think I look trans “enough” for them to bother remembering that I am. 

A constant message of never being quite enough 

inadequate

It presses down on me rendering me sensitive and jumpy, quick to defend myself and impatient with well meaning but harmful allies. 

I am far from the only person who is socially othered by the wider queer community for not looking “right”. It is a problem that impacts many queer people, across many identities. 

I know I feel it in my bones. 

Queer inclusion needs to change…and if we are not truly doing the work, to change how we think, how our communities work, then we are leaving people behind, doing to them what was done to us. 

*for more information on the oppressive politics of sex and friendship please follow and fund Rhizome Syndrigast Coelacanth Flourishing who’s wisdom and work has forever changed the way I think and talk about social politics. 

**There are indeed some legal protections for being in a legal marriage with a person whom the government sees as being “the opposite sex” regardless of how meaningless that term may be to a nonbinary person. I’m also less likely to be attacked physically if I am misgendered heavily enough-consistently enough that I do not appear to be a threat to those cis people, basically if seeing me cis people think they see a possibly strange fellow cis person. (Whiteness also emphatically protects me from physical reprisals even for being visibly and noticibly trans or gender nonconforming) It is important to acknowledge the complexity of the situation.

Coming Out, In Perpetuity

#30daysofpride: Day 6 : Who was the first person you came out to? 

I’m sure one of the first people I came out to as queer were friends in high school. That wasn’t much of a notable coming out because I hung out within a local punk/hardcore scene that was very queer accepting and because people had been interpreting my masculinity as lesbianism since I was in grade school. It was just generally assumed I was queer, I only had to affirm their guesses when they asked…and they did ask. 

The first notable coming out I remember was unintentional. 

I was 16, and was in the throws of several social awakenings. In the local punk, skater, and stoner crowd I found, for the first time, people who didn’t seem to punish me for my differences. They seemed to like me. I was in love….or something like it. 

One particular new friend I met in an art class. A. was a junior to my sophomore. She was confident, funny, dismissive, and beautiful. She threw her head back when she laughed. She talked about how frustrating it was being the token non tiny femme Korean girl in a subculture that objectified Asian women. She wore oversized houndstooth pants and doc martins…and she absolutely and embarrassingly knew I had a crush on her. I was so smitten. I wrote her love poems in secret. 

One weekend I came home, to my mom, who was inebriated as usual. I can’t remember now what precipitated my emotional state specifically, but I asked my mom in a hushed fervor, how I could tell if I was in love. My moth was immediately on high alert, wanting to know who I thought I was in love with. I was to nervous and embarrassed about the potential for being wrong about my feelings to answer. After many shouted demands in a shrill panicky voice she pounced on me, pulling my hair and wrestling me into the living room. She screamed, “Is it A?” 

 I was so shocked and surprised all I could do was whisper, “how did you know???” I must have been talking about her a lot.  

 Once she calmed down, she told me that it likely wasn’t real love, both practical advice for a teen with their first crush and advice heavy with homophobia. For years after that she referred to my queerness as a phase and outed me to both my father and step father in ways that had multiple negative impacts for me. 
The first people I likely came out to as trans was an online parenting group I was a part of. They were as accepting as they could be. 

When I told my then husband he paced the living room anxiously. 

 “But you aren’t gonna get the surgery are you?” he asked, more or less. 

People were often superficially more accepting of my being trans, than my being queer…however that was actually because people categorically didn’t understand 95% of the time. 

 “you’re just you honey, you’ve always been a tomboy” they would say laughing in a conspiratorial and dismissive manner. 

As trans narratives have become more mainstream, people understand a little more, though their understanding is still limited and problematic.  Still they are therefore much more disgusted, awkward, anxious, or offended then they used to be. 

 Today, as a transmasculine enby who doesn’t fit the stereotyped queer aesthetic… who isn’t young or thin, who is unable to bind, who’s disabled body is no longer able to communicate in carriage and gate, my inherent queerness…who can’t stand the sensory input of button up shirts and can’t afford an elaborate wardrobe, who has children in arms, I am forced to “come out” constantly. 

The dominant colonized, white, queer narrative doesn’t allow for my existence, for the existence of people like me and so here I sit, shouting it from the roof tops at all times.*

I am here. I am Queer. I exist Dammit. 

I’m also pretty fucking tired, but being complicit in my own misgendering and erasure (and the misgendring/erasure of my peers, friends, and chosen family) is no longer an option. So on I plod. 

*it is worth noting that this silence and erasure  is even more violent and oppressive for IBPoC who are othered by the very nature of not being white, while inheriting a generational murder and appropriation of their own indigenous cultural sexual and gender identities 


Leaning Acewise

#30daysofpride day 5, who was your first celebrity crush? 

I’ve never really had celebrity crushes in the same way other people do, but it has taken nearly forty years to figure that out for a convoluted set of reasons. 

I do develop aesthetic crushes on certain people, strangers or celebrities. But that is where that ends. I don’t imagine having sex with them or even having long emotionally fulfilling relationships. I feel like some people are pleasing to look upon, and I like that just fine. done. yay. where are the cookies? 

As a child I spent hours looking at the posters of boys I had default chosen for my walls, tracing their long eye lashes and full pouty mouths, trying to figure out if I was actually attracted to them…why they made my stomach slightly unsettled, why I didn’t think about kissing them or marrying them like my peers did. But there was something… 

when I was young I always chose the pretty bad boys of that era for my public crushes, Johnny Depp, Richard Greico, Judd Nelson, and Corey Feldman…as well as semi secret fascination with women like Vasquez from Aliens, martina Navratilova, kd lang, etc…women who didn’t have long hair, or seemed less flowery to me. I wasn’t sure what it was about short haired assertive women exactly but I was fascinated, magnetically drawn. It would take another fifteen years for me, while semi obsessively watching Merlin, Veronica Mars, Smallville, and Doctor Who, to realize that those “crushes” were because I felt some connection to those people in regards to their gender presentation or personality. 

These days I can tell the difference between an Aesthetic crush and an oh my gosh, that person is so much like me why couldn’t I have just been born a little more like them, fascination…occasionally a person might fit in both categories, but that is pretty exceptionally rare. 

Aesthetic crush examples:

Agent May from Agents of Shield

Ronan Dex from Stargate Atlantis

Amanita Caplan from Sense8 

Maggie Sawyer from Supergirl

Zoe Washburn from Firefly/Serenity

Yo-Yo Rodriguez from Agents of Shield

Damon from Vampire Diaries

My aesthetic crushes tend towards tough, self confident, assertive women. 
My current Wishful thinking fascinations:

Newt Scamander from Fantastic Beast

Chirrut Imwe from Rogue One

Hernando Fuentes from Sense8

It’s rare that I find characters I relate to in that way anymore, as I have aged and matured I find I relate less to any characters at all. Characters I have related to since I recognized I was transmasculine included Lex Luthor in Smallville, Spike from Buffy the Vampire slayer,  Merlin from the BBC show Merlin, and Freddy from the third and fourth season of Skins. 
I think the only “person” who currently inhabits both lists is Dean Winchester…I still haven’t quite outgrown him though I think that is happening to a deg as well. 

Most of the time these fascinations or “crushes” don’t translate to the actor or actress as well because I don’t “know” them. The exceptions to that tend to be musicians because of the false sense of emotional intimacy. 

Also strong singing voice will give me at least a temporary “crush” on just about anyone. But that is actually a stim related situation. 

So who was my first celebrity crush? I guess it depends on how you qualify such things but Punky Brewster and Rainbow Brite might loosely qualify.