Spoons, In My Own Words

To begin with, this is my first post in about six months. Whoops. I assume the website has been withdrawing $2 from my bank account every month, regardless. My primary excuse for not keeping up with this blog is that I haven’t had the spoons to do so. Psychological blockages, writer’s block, lack of energy, and other distractions have hindered my motivation to express myself. I figure New Years’ Eve is a good time to hop back on this wagon. I also figure that I should begin by articulating a concept that I would like to communicate to my friends and coworkers: namely, what the heck I mean when I say I don’t have spoons.

I don’t mean that I need anybody sending me boxes of plastic utensils. Rather, I’m talking about the Spoon Theory of chronic illness and disability, initially illustrated by Christine Miserandino. It isn’t a theory in the scientific sense; it’s an analogy with a catchy name. In her narrative, Miserandino describes sitting in a restaurant with a friend who asks what it feels like to live with a chronic illness; in this case, Lupus. She hands her friend a bunch of spoons, tells her to count them, and explains that each spoon represents a decision that a chronically ill person must make throughout their day about how to allocate their limited energy. Such an individual needs to know how many spoons they start out with when they wake up to a new day, and carefully plan how to use those spoons. Certain activities use up more spoons than others, and one should keep a “spoon reserve” for the unpredictable but inevitable emergencies.

The Spoon Theory has become an important part of the vernacular among those living with disabilities and chronic illnesses of a wide variety. In any space in which “Spoonies” congregate – Facebook groups or message boards, for instance – you will hear much of the same: “I don’t have the spoons for this,” “I woke up with a bunch of spoons, but then x happened and now I have none,” “I’m trying to preserve my spoons.”

Of course, everybody’s experience with disability is unique; yet, at the same time, similar. So many factors could affect how somebody experiences it, such as what kind of disability it is, the environment they’re in, what medications they’re taking, if any. That’s why it isn’t enough for me to simply link you to Miserandino’s description if the goal is to help people understand me. 

I have multiple invisible disabilities: I am bipolar, I am autistic, I have hypothyroidism, social anxiety, panic disorder and mild agoraphobia. My body hurts a lot, but I haven’t been diagnosed with anything in particular on that front (I suspect osteoarthritis). Over time, I have learned how to allocate my spoons more efficiently, especially after being prescribed the appropriate medication to moderate my mood. Although I am capable of a lot more than I was before, it still takes a lot of planning to do what I gotta do and a lot of rest to prepare for what’s coming.

Working a full-time job, my days are almost always the same: work, then rest. Preparing, mentally and physically, for the next day. Or awaiting a weekend of deciding which errands to prioritize. Cleaning my room is something that’s always on my to-do list, but never gets done. You see, it’s not just physical activity that exhausts me: merely THINKING about engaging in physical activities costs me spoons. Sitting on my couch and observing the mess around me, weighing the enormity of the task before me, is enough to cause me to crawl into my bed and sleep instead. And then maybe, after a nap, I’ll clean about 10% of it before deciding, “Good enough.” It certainly doesn’t help that merely existing in a messy environment depletes my spoons for other activities.

I have the easiest job in the world. After a year, I’m quite skilled at getting things done in the most efficient manner, and am known as a jack of all trades. But there definitely seems to have been a shift in my job performance when my 30-hour work weeks were increased to 40 hours. Those extra two hours a day have a serious consequence on how I function for the entire day. On six-hour days, I didn’t have to worry too much about getting a lunch. I could get by on snacks, and by the time I was ready for a meal, my shift was over. Now, I have to plan for both breakfast and lunch. Take away two spoons. I have to go without my mid-to-late afternoon nap. Take away three spoons. I have to interrupt my mind-flow when it’s time for a mandatory break. Take away one spoon. I have to re-enter a mind-flow when the break is over. Take away one spoon. By the time I get home, there’s no way in hell I’m doing anything besides potatoing on the couch, watching Netflix.

Six hours was more than enough time to enter charts, run reports, and file away case notes in an uninterrupted work flow. Now there are more spaces, more in-between moments. In-between moments are very costly, spoon-wise. I’m basically sitting there, idling, wasting precious energy just by existing. The more in-between moments I have to endure – that is, the time it takes to transition between two activities – the sleepier I become and the less my mind is able to process.

This is the cost: for the first several months of my job, I was quite impressive to my colleagues and to myself. But now I feel more forgetful, more sluggish, and it hasn’t gone unnoticed. I make mistakes and come across as lazy. I become flustered when talking to clients, in person or on the phone. It feels like a definite regression to the days of grade school, when the long, exhausting days led to minimal effort and poor marks.

Needless to say, having a limited spoon reserve affects my self-efficacy and productiveness. (And I mean productiveness in activities that are worthwhile to my personal development, not by accumulating profit for capitalists.) The good news is that I’m aware of why I’m so exhausted by the end of the day, and that it’s not my fault. There are techniques I can use to help complete activities. It helps to visualize myself doing a thing before actually doing it, so that when I’m doing it, I’m not wasting too much time trying to figure out what the next step is. To-do lists and planners, as inconsistent as I am at using them, are crucial to not forgetting absolutely everything. Even if I can’t reach everything, I’m still aware there are still things to do.

Hopefully, I will be able to find accommodations at my work place that take my Spoonie-ness into account. I have a few ideas: arriving at work earlier and leaving later so that I can take a longer break (30 minutes is nothing but disruptive – an hour or two would be more worthwhile, and I could spend that time re-charging), breaking my day up by activities so that I’m not spending as much time multi-tasking, and making my colleagues aware that I can’t just jump from one activity to another on command without losing a bunch of spoons. Thus, one of my New Years’ resolutions is to not only be aware of my own limits, but to not be afraid of making others aware so that we could work together to get the job done as efficiently as possible.

Happy New Years!

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I Can Hear Music

How do I even write about music? How do I do it justice? How do I comprehend and describe the transcendent realm in which music exists? Because it certainly comes from somewhere magical. A gift from the gods. The voices of angels. Or just the melodies flowing out from ridiculously creative human brains.

Not my brain. All my mental faculties come to a halt when I’m holding an instrument in my hands. I was last chair among violinists in my middle school orchestra for three years in a row. I’ve taken bass guitar lessons and gave up after a couple months. I’ve been trying to teach myself the piano for damn near 15 years. I’ve been told I’m not a bad singer, but what good is that when any kind of audience shuts me down? I purposely sing badly in front of people, like it’s all a joke. Nope, music is a mysterious language to me, and although it speaks to my soul, I cannot translate it directly.

I think being autistic makes my music listening patterns a bit weird. My music tastes have evolved over the years, but it’s usually the same pattern: I have the one favorite band that I spend 80% of my time listening to, a smattering of individual tracks of no one particular artist the other 10% of the time, easy listening probably at 8%, and nostalgic music as the last 2%.

In high school that sounded like this: a shitload of Queen, every possible track and B-side track and solo track I knew existed; random indie, emo and 80’s hits; ambient space music; and songs from the good old days, namely the 90’s and early 2000’s.

Nowadays, I still like listening to 80’s playlists when I’m in an energetic mood, or when I want to sing privately. I know most of them. As for easy listening (basically background music), I rely primarily on KRTU 91.7, Trinity University’s jazz station. Nostalgia music now also includes Queen and the aforementioned random indie/emo music from the mid-2000s.

But now my favorite band is Mew. I’m not nearly as obsessed with them as I was with Queen. With Queen, I wanted to know every little detail about the band members, the meanings and inspirations behind the songs, the intimate details of their private lives, every bloody possible thing. When it comes to Mew, I don’t know shit about them, other than that they’re from Denmark and the main singer’s name is Jonas (and he’s cute af). But their music… I cannot get enough. It’s unlike anything I’ve ever heard before. It’s otherworldly. I think it exists beyond our locale in space-time. It transports me to another plane of consciousness.

I discovered them on some French indie radio station, back in the days when iTunes had an incredible list of international radio stations. Not sure what they did with that, but I have absolutely no use for iTunes anymore (and if that thing still exists and I just don’t know how to get to it, halp plz). The first song I heard was “Cartoons and Macrame Wounds.” Truly an incredible introduction to Mew.  I downloaded the song instantly. The station would also play “Beach,” which is a fun song to listen to while driving on a bright, sunshiny day. Or always, but especially then. I went ahead and downloaded all the albums that were out at the time.

One of the amazing things about Mew is that I enjoy pretty much every goddamn song they’ve made. Even with Queen, there were some songs that I would skip. But I couldn’t tell you what my favorite Mew song is. I can say that my favorite album is “And the Glass-Handed Kites.” Almost every song flows seamlessly into the next… unless you’re listening to it on a crappy music player that separates them half a second.

Yet there’s an experience beyond the usual transcendence of great music that Mew has revealed to me: having a crush on a song. Or just part of a song. I’ve had crushes on many a musician. But never before on a song. I’m talking about songs that fill me with a sort of romantic-sexual giddy feeling. More specifically, I have a crush on his voice when it does The Thing that it does. I can’t even explain it. It happens at the end of “Sometimes Life Isn’t Easy.”

Safety net, I regret
I am shaking
We move along
I am shaking

Then again, during the last two minutes of “Clinging to a Bad Dream.”

I was held to be
For no one
No one lasting
*cue angelic choir*
I think, I thought
Maybe you can change me
I know you and I are
Clinging to a bad dream
And in between the shades on your screen
They come and go
Sometimes they never show…

And there’s a part during “The Night Believers” where his voice does The Thing and then That Other Thing.

The thing: Outside, and it occurs to me we’ve lost the light.
(That other thing: We’ve lost the light!)
We shared a box in someone’s dream
‘Till the ponies arrive
We’re only wasting time
Which I know, I know something about

I imagine Mew being played at my funeral. Call me morbid, but this is how I would want it to go: during the wake, or the reception, there’s a compilation of home videos from my childhood playing on a screen, and playing over it is “Drinking Soda.” I think I would want to personally edit it together to have it prepared for that time, because it’s very specific in my head. As soon as I can figure out how to convert my home videos to whatever format they need to be, if it’s even possible, I will put it together for my funeral, which hopefully won’t occur for at least a few decades. Or maybe it could be for another occasion, like my birthday, but could also be used at my funeral.

Then there’d be a far more dramatic scene: my casket being lowered into the ground, my friends and family gathered around dressed in black, as the song “The Seething Rain Weeps for You” blasts throughout the cemetery. Honestly, I’m not sure how anyone can listen to that song and not imagine singing to somebody in a casket.

Saying goodbye now
Looking at friends
A lump comes in my throat
Hearing them all speak of you

And that’s it, really. Just copy/paste this post to my Last Will and Testament. I don’t care how the funeral goes beyond that. But please, no flags or religious symbols.

Sometimes, I need to take a break from music. I love it too much to let myself burn out on it. During these periods, the extent of my musical consumption is just listening to jazz on my work commute.  I hadn’t listened to Mew for over a month until the other day, and it’s as magical as ever. I’m not entirely sure why I need music breaks, but it might have something to do with the fact that when I want to be productive, it’s best not to listen to music that captivates my whole attention. No Mew-level transcendent experiences, no 80’s dance parties. Sometimes, I just ain’t got the time for it. I’ve been pretty darn focused on my cross-stitching for the past couple months, and my preferred background stimulation is some show I’ve watched a million times (The Office, Parks and Rec, the various Star Trek series, etc.).

Music is too deep, too distracting. I want to listen to it with my noise-canceling headphones, close my eyes, and let the melody embrace my entire being and carry me to that magical realm.

Cross Stitching Update: I’ve Been Busy

It appears that my most recent update on my cross-stitching projects was a couple months ago. It doesn’t feel like very long ago that I made that post, but a lot has being going on, and my hands have been busy.

First things first: I had mentioned that I was working on a gift for my Uncle Pat’s birthday. Here’s the final product, held by my uncle with pride!

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Another birthday card I made in April was for my BFF, Josey:

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This is a bookmark that I made for a coworker’s birthday:

Two of my coworkers got married (not to each other) so I made each of them a romantic bird card:

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I was commissioned to create this decorative pincushion for somebody’s mother on Mother’s Day:

I decided to do something new and stitched on this wooden box. I think I’ll stick to fabric.

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This is what I made for my own mother for Mother’s Day:

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I made some buttons for Autism Acceptance and Pride:

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I made this one a couple days ago for my coworker’s birthday:

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And here are my active Works In Progress (W.I.P.):

These photos were taken today. However, I have made considerable progress on the angel’s frill in the hours since taking this picture.

This was an unnecessarily long post due to not updating frequently enough. I’ll make it my goal to post about cross stitching, and my other SIs, on a weekly basis.

Until next time,

K

Coming Out Autistic

When it comes to being queer, it is just something inherent to my identity that I’ve accepted since middle school. I’ve been fully “out” as bi since I was in ninth grade, and came to terms with being agender in college. It’s not something I feel is necessary to hide, and if someone reacts the wrong way then they’ll probably catch, if not my hands, then a good verbal lashing.

When it comes to being autistic, I’m perhaps shier. It’s a newly realized aspect of my identity, and I’m still coming into my own understanding of it. I still feel that nagging sense of, “I’m just talking about it for attention,” “I’m lying to myself and everyone and all my doctors,” and, “It doesn’t even matter.” That oh-so-familiar self-doubt of being halfway out of the closet. Then I talk to other autistic people, and a lot of them feel the same way, especially being newly diagnosed later in life.

There are even research papers exploring the parallels between being autistic and being queer. Knowing there are people who oppose you, who think you should be “cured” or “changed.” Feeling a sense of isolation amongst your cishet/neurotypical peers and a sense of belonging in (segments of) the autistic and LGBTQ+ communities. Getting sick of people trying to debate your humanity with you.

When it comes to those more isolating aspects, I am personally infinitely blessed to be surrounded by people who are comfortable with my queerness and autism, and for the most part my mental illnesses.

Up until today, I think while most people at my workplace knew I was queer, I had told only one or two about being autistic. But then here comes the ol’ “Light It Up Blue”/ “Autism Awareness Month” nonsense that gives plenty of autistic self-advocates a headache, and probably a few anxiety attacks, so I felt like I had to at least say something just in case someone else was planning on “Lighting It Up Blue.” I hate confrontation. Better to take preemptive action by typing up my views on the matter in a mass email to every full-timer in the organization. Thus far, all responses have been very positive. I can certainly rest knowing that if someone missed the memo and does “Light It Up Blue,” I’ve equipped my colleagues with the information to call it out.

There are probably extremely few workplaces in which someone might feel comfortable doing something like that. But in the context of my own workplace, being an outspoken advocate is what we’re all about. Challenging rape culture also means challenging ableism, transphobia, racism, and all the myriad other factors that can affect how a person experiences sexual violence. If I want to be a helpful advocate for autistic survivors of sexual assault, then who better to practice on than myself?

These are my words:

***

Hello everybody!

I’d like to introduce, for those of you who do not know, a cause near and dear to me: Autism Acceptance!

Nationwide, April is widely known as Autism Awareness Month. Specifically, April 2 is designated as Light It Up Blue for Autism. The color blue was selected to represent the fact that boys are overwhelmingly the ones diagnosed as having Autism Spectrum Disorders. A lot of those in the autism community, including myself, feel that this does not paint a very accurate or inclusive portrait of autism – young autistic girls are often misdiagnosed as children and don’t receive their ASD diagnoses until later than boys, because many health professionals aren’t aware it can even affect girls. Autism in girls also tends to present differently than it does in boys, and hasn’t been extensively researched as it has in boys. Therefore, we would like to challenge the stereotype of autism being a “boys’ disorder” by encouraging people to wear RED INSTEAD!

We also prefer the phrase Autism ACCEPTANCE, rather than simply Autism AWARENESS. We feel that while many people are certainly aware that autism is a thing, a lot of the nationwide dialogue around autism stems from misunderstanding and sometimes even prejudice. For instance, the best known autism organization in the United States is Autism $peaks, which plays its own part in producing hysteria and prejudice around autism. Very few actually autistic individuals serve any role in the organization, undermining the activist motto “Nothing About Us Without Us.” Against the wishes of actually autistic individuals, their funds go toward research for finding a cure (that will probably never exist). Because autism is pervasive and colors the way we experience the world, a search for a cure implies that who we inherently are is bad and wrong.

We believe that the real challenge to face is fighting societal ableism and existing eugenicist beliefs surrounding people with disabilities and our right to exist as we are. Many of the challenges associated with autism stem from communication barriers that arise from overstimulating environments and poor accessibility, including communicating with autistic individuals in ways that work for them (which for many does not involve speech at all, and certainly limited eye contact). But whether someone is verbal or non-verbal, communication is key! AUTISM ACCEPTANCE means accommodating autistic individuals’ unique communication needs, which varies from person to person, rather than expecting autistic people to communicate in traditional ways. AUTISM ACCEPTANCE means celebrating neurodiversity. AUTISM ACCEPTANCE means learning about autism from those it DIRECTLY affects – actually autistic individuals!

Because I could probably write a multi-volume encyclopedia on the matter, I’ll leave it at this. Here is a link full of wonderful resources, and of course I’m always willing to answer your questions!

As for myself, there’s only a couple of y’all who I have informed about being autistic, so consider this my coming out autistic! (And as a queer person, I must confess that “coming out” autistic, which I was diagnosed as only a couple years ago, is certainly more intimidating for me than coming out queer, which I’ve known since I was a young child!)

Thank you for reading!

#RedInstead #AutismAcceptance #WalkInRed #CelebrateNeurodiversity

 

Cross Stitch

One of my special interests is cross stitching. If you’re wondering what makes something a special interest as opposed to a regular interest, it’s the intensity with which many autistic people engage with their interests. Another word I’ve used to describe my special interests is obsession. We want to know everything about our special interests. We want to talk to people about it, although frequently end up annoying them. For me at least, my special interests tend to become incorporated into my identity. I’m “that girl who’s obsessed with Freddie Mercury.” I’m “whale girl.” (Those were mostly just in high school.) At least with cross stitching, people seem to be interested in what I do.

As with any other special interest, I want to collect anything that has to do with it, and will meticulously organize that collection. In cross stitch terms, that means owning a billion cross stitch magazines, making sure my DMC thread inventory is complete (I need to re-up on a few right now), and having a Google Drive that stores all my favorite past, present and future projects that no human could ever complete in a lifetime. But I like to dream.

I’m usually working on several projects at once. I have a few abandoned projects that I started a few years ago and will get around to finishing eventually. I have many partly-finished projects that still need to be pillowfied or framed or whatever.

My active projects tend to include: a big, major project that will take several months to a year and is intended to be a special gift for a special someone, a medium-sized project for my own pleasure that I will use to decorate my own space, and a small one that takes from a few hours to a couple weeks that I give as gifts. I kinda switch it up every few days to stay interested.

The big project I’m working on is a Celtic Angel for my grandma. Every once in a while I show her my progress. I started it in early December 2017, and first revealed its progress to her on Christmas. I don’t know how long I expecting to take to finish it, but it was intended as a belated Christmas gift. Maybe by her birthday in November.

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My personal project is this soon-to-be pillow with a fox pattern.

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I’m working on something else for my Uncle Pat’s birthday, but I’ll post a photo after it’s been gifted.

As I mentioned earlier, people tend to be interested in this special interest. And as I mentioned in another post, I don’t really speak about things I’m passionate about until someone else expresses interest. I’ve learned from past experiences that it can be annoying. However, when people see me working on a cross stitch project, they often want to know more. “How long have you been working on that?” “You must have a lot of patience.” “When did you start cross stitching?” “How much time do you spend on it?”

As for my responses: “Oh, I started it on [x date].” “I guess so. It just relaxes me.” “I did some as a kid, but then I picked it up again a few years ago.” “I like working on it during Netflix binges or just whenever it seems appropriate.” I often add, “I’m making it as a gift for X.” “I’m also working on a couple other things.”

If I was an adolescent with poor impulse control as I indeed once was, I’d go overboard by showing them the million other projects I want to do, and listing every project I’ve done in the past four years (and there have been many).

So that’s an introduction to what is currently my primary special interest. If anyone reading this is interested in knowing more, feel free to contact me. Also, allow me to share my Cross Stitch Google Drive, which is pictures of the projects that I have available, frequently updated. On your requests, I could upload PDFs containing patterns that you might want to do yourself.