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

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.

Composition

my body is made of rusted iron and heavy shattered rocks. 

my right ankle is a half rotten turnip

my skin throbs

my muscles moan like elder trees in the wind 

fooshfooshfoosh

ahhhhoooooooooooooo

my head curls in on itself
a half realized defensive posture. 

i dont have the energy to cry

cold, dry, despair rolls down my cheeks

whispering its sweet sweet nothings 

desperation reframed 

for more empathetic consumption

innocuous smile and always gracious 

appreciative

inspirational

the yard stick my dignity is measured by 

right to thrive hammered out in meandering prose and brief spurts of productivity 

whatever that means

im to tired to even guess 

Allowing Myself to Flourish

Recently I bought myself a pronoun bracelet.* 

I dithered over the decision for weeks. Could we afford something so “frivolous”? Was I being selfish? What if I spent the money and then found the sensory experience off putting? Or I just didn’t end up wearing it to often?

Still I couldn’t stop looking as my dysphoria was creeping back into the edges of my life and whispering, always whispering painful things in my ear, until the weight of my sadness started crushing me. 

I have social dysphoria mostly with a smattering of physical dysphoria thrown in for good measure. I have developed a tenuous truce with my body over the years. It is lumpy, bumpy, and not congruent with my self. It is sick perpetually, weak, tired. I feel these things in my bones but it has also grown and fed four magical children, for this I am eternally thankful. 

Still the inability to bind due to my health combined with having small in arms children often means I get immediately socially coded as a woman even among close friends and family which causes me a deep and permeating despair. A despair so deep that when I do get inevitably misgendered by a loved one often all I can do is cringe internally. 

My hope is that with the bracelet I can simply point at it to remind people rather than trying and failing to navigate spoken language in that moment of high emotion. Even if that doesn’t always work, making my identity more visible, when generally I am invisible, gives me strength and peace. 

So finally I found this simple and perfect solution. It was six bucks with shipping, which was a price I could afford even with my heavy spending anxiety. I chose both pronouns and the colors. It isn’t fancy, and it probably is a bit to delicate for how rough I tend to be on jewelry but I love it. It allows me to feel more authentic and in charge of myself when illness and disability often takes away my sense of personal agency. I may not be able to many of the things I want to do, but I can do this.

 I can be me. 

I am me no matter what.

And now I have a way to remind you too even when the words twist up and hide behind my toungue. 

* I got the bracelet here. They sell Queer Pride, Autistic Pride, and Spoonie/Disabled Pride jewelery. I want so many more things from them.

Not Quite as Advertised

Fuck I’m exhausted.

Which words am I supposed to find, and arrange in perfect artistic harmony before the exhaustion worms it’s way from my bones, saturating my muscles and tendons?

The drum beat of my tired heart

Can’t I just take a nap? All the naps? I want to rest for a night or a lifetime.  

I want to feel strong again

Body is as body does 

Body tries at least

Tries to breathe, be productive, contribute to my family, to communicate, to understand, to convince people to see me as I am, not suited to this binary system, stim stim stimming my life happily away.  

I’ll take a hot bath, dark room, and fuzzy blanket for one please

Parameters of what I am and what I am allowed to be drawn and re-drawn in your personal context 

Come hell or high water they say

——–

————

Not your inspiration
Not your anything. 

———

————-

If only gravity didn’t weigh so heavily on me
Every cell in my body being dragged down into cold, dry, dust

I’m just so fucking tired

I reiterate ad nauseum 

The body no longer works as requested

As needed

Wheezing lungs, energy lost, pain creeping in and up 

——-

My reflection denies the labels of the flesh 

Angry 

hungry masses parcel my body 

Labeled with their personal gender expectations

-woman-woman-woman-woman-

Stamped in comic high relief 

hips and ass

Lips and tits

All this I refuse, leave it dripping off my fingertips 

To pool, curdling at my feet

Enough

The Interplay of Multiple Points of Oppression and Privilege in My Day to Day Life part 2

Today I am talking about the aspects of my life that are impacted by various forms of oppression or marginalization. Often times these are much easier for us to identify because we can see how our experience differs from the majority, and because it often leaves us feeling sad, angry, frustrated, scared, or alienated. In short, it feels bad. 

To reiterate, being oppressed in one area does not negate privileges in other areas. They may impact each other in various ways but they do not negate each other. A cis, queer, white person still has both cis privilege and white privilege and will therefore still have those protections as they move through the world, which is a very big deal. Queer and transgender PoC do not have that protection which deeply impacts their experience of and safety in the world on every level. 

So let’s start with what my identity is and isn’t. 

I am a chronically ill, invisibly disabled, autistic/neurodivergent, queer, multisexual/bisexual*/pansexual, nonbinary transmasculine, greyromantic/nebularomantic, and poor person. I also identify as demisexual, ethically non-monogamous, and pagan but as a liberal white person I find myself not overtly negatively impacted by those identities. Whiteness moving in more liberal circles makes being demisexual, “polyamorous”, and pagan, even in the unusual ways I may express those things, more or less accepted and even embraced as being “quirky”. Quirky in my experience is often either a sign of other privileges that person posesses or with more marginalized people, tokenization at work. 

I also have some situational or relative privileges which impacts the way I am oppressed. Because people in general expect  and assume parents to be cis gender and heterosexual, when I am with my cis male nesting partner and kids, especially when I am with my toddlers, I am not usually read as transgender at all, which means I usually don’t read as queer either. This protects us socially from homophobic harassment, me from transphobic harassment, and means both my relationship and children have more legal protection than I have or have had when in relationships with women, femmes, or folks socially read as “women”.  But the trade off here is that it erases my identity entirely. It is lonely, anxiety causing, infuriating, and upsetting, but it is less likely to be dangerous.

Other ways in which the complexity of passing privilege exchanges increased physical and social safety for erasure and dismissal for me personally is that my disability is invisible and most people seem to see me as weird or quirky rather than neurodivergent. This is a mixed social bag but is in most cases,  physically safer for me as a white, “educated”, disabled and neurodivergent person with a home and relative stability. It means instead of violence and dismissal as a human who deserves a life, I get a lot of isolating microaggressions and disbelief. 

One last relative privilege that bears reiterating is that as a white person raised and encultured as a “woman” I am more likely to be written off, dismissed, or scoffed at than violently attacked or murdered. Trans women and femmes of color, especially black trans women and femmes are frighteningly more likely to be brutalized and/or murdered. I should not ever leave them out when I am talking about multiple levels of oppression and privilege.

So where does that leave me? Well let’s talk about that. 

As a chronically ill person I was ever so politely forced out of my good stable job I had held for 8 years, almost 2 years ago exactly. I can no longer work outside my home or attend any social anything except in situations where my exposure to airborne chemicals, scents, smokes, and illnesses are at an extreme minimum. I am therefore perpetually under or unemployed, which impacts our ability to simply live reasonably. I can not attend support groups for my other identity aspects, social occasions, or gatherings because they will be inevitably to smokey or to perfumey. Most of the time I am unable to leave my house more than once or twice a week for anything more than a brief sedate walk. I am consequently locally, socially isolated and constantly both stressed and carrying an immense amount of guilt about our financial situation. 

Because my disability is invisible and varies with the ebb and flow of my illnesses, people often underestimate how heavily I am impacted, or disregard my struggle entirely as “made up”. I have only once or twice had people offer or ask about accommodation that might make it possible for me to attend something, mostly I am made to subtly and not so subtly understand that my affection, my friendship, my love, my time, and companionship is disposable, expendable, and categorically not enough to merit any time or effort. 

On a personal level it is nearly impossible to maintain local friendships, no matter how good our intentions may be. People tend to need time and energies I simply do not have, everyone slowly falls away. It isn’t their fault, it’s hard to be friends with a distant memory. 

As a neurodivergent person I have some social and physical difficulties, we would be here all day if I started listing every single potentially negative impact or aspect of oppression, of every single one of these identities. In the case of autism one thing that is weighing heavily on my mind lately is selective mutism and difficulty with words, compounded by sensory issues and anxiety. Lately I have been so stressed I have been unable to maintain contact with most people, and unable to reach out or converse “normally” when people reached out to me. This difficulty reached its apex three days ago when my brain became totally bogged down with so much anxiety and autistic burn out that it became almost impossible for me to speak, write, or even make simple decisions. My way with words was simply not there. This obviously has social impact, it understandably alienates most people but also it impacts my ability to contribute to my family. Writing, reading, my brain, and my hands encompass the entirety of my ability to contribute financially to my family’s well being. If one or more of those become compromised, it can be catastrophic for us….the stress of which only increases the depth and width of my burn out and anxiety. 

This very article has been written in fits and starts, in an exhausting struggle for the correct words and with twice as much proofreading needed, because of the complicated for me interplay between my need to earn a living and my need to honor my own reasonable boundaries and limits.

The overall arc of my queer, gender, romantic, and sexual identities are a complex stew of moving parts so rather than have this go very long. I will touch on that in the next installment of this series. 

*there are some generational differences in how people use the word bisexual, as a nonbinary transgender person who grew up using bisexual in a trans and self inclusive way,  I use the definition of bisexuality, genders like my own and unlike my own, or more generally, attracted to more than one gender.  

~~~~~~

Read the first installment or third installment of this series here. 

The Interplay of Multiple Points of Oppression and Privilege in My Day to Day Life part 1

There are two ways that the word Intersectional is used in social justice oriented spaces. Arguably the most commonly used definition is to indicate multiple levels of marginalization in a general sense. However Kimberle Crenshaw coined the term to specifically have language to talk about multiple levels of marginalization within the black community and how that changes and effects IBPoC experiences. Because this word and concept was not intended to be co-opted for the use of white and non black PoC, I will not be using it in this essay. 

*I am breaking this down into more digestible sections so it is not a huge wall of text. 

I want to start with my privileges, the things in my life that protect me and add automatic weight to everything I say. The big ones are of course being white. This one can not be underestimated , whiteness softens the blow of every other aspect of my opression, makes it less dangerous, and lifts each one of my privileges to an even higher and more impactful level. I could talk solely on this post about the ways I am protected by my whiteness and still not cover it all. It is that far reaching and intertwined with every aspect of our culture of colonialism and oppression. I was also taught to speak English as my first language and in a socially accepted middle class, white, “professional” dialect when it is expected, which means the things I say are met with less resistance. I have a stable roof over my head and necessary utilities such as water, electricity, internet access, and at least one cell phone in the family. These privileges allow me to take advantage of what resources that are available to me and increase the ease with which I can potentially increase my resources.

Also there are a set of less likely to die privileges that are complicated by erasure which is a sort of emotional violence, and does result in higher suicide and self medication rates but still means I am less likely to be physically attacked. Those are the situational passing privileges of being cis passing and het passing due to people assuming parents of small children must be heterosexual and cisgender. Finally, Transgender people who are read as”female” by the public are less likely to be murdered, and less likely to be the victims of physically violent hate crimes in general. 

Other ways that people’s opinions can be skewed to my favor before I even open my mouth is that I am in my thirties which is the perfect storm of both young enough and old enough to not be out of hand dismissed, written off, erased, and/or infantalized. That means people tend to take me much more seriously than they used to, while not yet writing me off as archaic or soley a caretaker and advice giver. I’m also moderately attractive as gauged by white, colonialist, European beauty standards, and within a range of socially acceptable weight and body same shape presentations. Though it may seem silly to you if you share these privileges, all of these things mean people are more receptive to listening to me and taking me seriously, which makes it not at all silly. People who do not have these privileges are often erased from dialog and dismissed outright in such a way that makes it extremely difficult for them to get people take them seriously, or to see them at all. 

*sometimes we are blind to the ways we have privilege because it is seemingly such an intrinsic part of our existence, to that end if I think of other places of privilege I benefit from, I will add them in. 
I believe that for myself as a white person, if I am having any discussion about my marginalized identities, I need to start from the places I am not marginalized, where I need to be mindful of the social power I hold and how I wield it both explicitly and implicitly. 

Continue reading Part Two and three here.