Horses are good company -- The Witcher

Going to hang out here and Tumblr since these are places I can keep relatively doom-free.

I have been dealing with intense stress for years now, but particularly in the last 5 months, and I have skills I've honed over that time.

I concentrate on things that fill the metaphorical pitcher. They feel good, are satisfying, are calming. These include taking photos, working on jigsaw puzzles, petting animals, caring for plants, collecting rocks and pebbles, and cleaning / de-cluttering. It also helps to connect with friends, sending photos or emojis, just some little "hi" like that, or longer interactions if possible. Anything creative, if I have the energy and can tame the anxiety: making things is one of the more satisfying experiences in life.

Where I can, I contribute to my volunteer organization, LGBT Books to Prisoners. I am not able to do much these days but I did sit on the meeting and boss people around a little bit. Doing small things to improve the situation for folks. Caretaking, service.

I pay attention to sensory joy, a term I learned from autistic bloggers. I wear clothes that are soft and comfortable. I have soft blankets and a teddy bear on my bed. Strings of "fairy lights" (not Christmas themed but what I called Christmas lights growing up). Diet Mountain Dew, I realized, is a sensory joy for me and why I drink it so much. Music is a big one. Jewelry. Beautiful artwork. Pay attention when something feels good, note it, and try to increase that feeling in your life.

I'm investing in my space to try to make it as pleasing as possible, and shout-out here to the maid service we have cleaning the house. It's been SO nice. Incredibly worthy investment, which I think notions of class and pride interfere with for many of us. For me it's about disability. Every time they come I think "there's no such thing as unskilled labor" because they are so quick and professional.

Something my friend said else-net was along the lines of "people don't want me to feel this bad." I had this thought a couple of months ago, too: If people knew how I was suffering, they would help if they could, and that motivated me to ask for help, and keep asking. I am still practicing asking for help, and contending with confusing feelings around that.

Shout-out to legal marijuana in Minnesota. I wish this for everyone who desires it. Regular use of edibles has saved me. It temporarily relieves some of my pain and anxiety, and the only side effect is some dehydration. I am overly careful with it due to my anxious nature.

Boundaries, they can be tough but are so important. Sometimes (often) I don't answer my phone. It's gonna irritate and baffle some people but that is their problem because it helps keep me sane. At the end of the day I am accountable only to myself.

Journaling has helped me in the past, and so I will try to continue with it as a practice.

Thank you to runpunkrun for finding this article for me! I thought it was lost for good so now I'm going to post it several places.

Selective Mutism
3 September, 2010guest post

“To choke”, used as a metaphor in performance, means to freeze up, to fail to perform, to be overcome with stage fright or other emotions and simply stop moving. To become “choked up” with emotion, a phrase familiar to many of us, means to feel emotion so strongly that it is difficult to speak. It is a feeling of the throat tightening and words stopping.

These are natural, normal phenomena that most people feel once in a while.

I have Selective mutism (link goes to Wikipedia) which I classify as a disability and also believe to be a natural and normal phenomenon, albeit a rare one, affecting an estimated 7 in 1,000 people. I am currently seeking treatment for it which has me thinking about selective mutism more than I usually do, and its impact upon my life.

Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak. It is not a reflection upon the child’s parents; it is a disability. The child would like to speak but cannot, in certain environments, to specific people, or about certain topics, due to extreme anxiety. This disorder can extend into adulthood, which is the case with me. I was never formally diagnosed or treated as a child.

There are specific instances from childhood and adolescence that stand out in my memory, and others that my family still talk about, that are good examples of selective mutism in my life:
I did not speak to my preschool teacher the entire year (but talked freely at home)
I did not talk to store clerks
I went to junior prom and did not talk to anyone due to anxiety
I did not talk much in church/Sunday school and did not make friends there; although I made friends freely in other venues

What I have trouble talking about now: Basically anything that is associated with a lot of emotion. Here are some examples:
Sexuality, being queer
My chronic pain and illness
Conflict with friends or family
I have trouble calling people I don’t know or knocking on doors, although I don’t think this is uncommon for shy people
I am sometimes uncomfortable being asked to keep secrets or not to talk about things because it reinforces this anxiety

One article I read recently said: “You can’t get a kid verbal until you have social comfort” (http://www.selectivemutism.org/news/people-magazine-spotlights-dr-elisa-shipon-blum-director-emeritus). This resonated quite strongly for me, because as a queer person in society, who was closeted (to myself) for a very long time, it is rare that I am socially comfortable. I have certainly learned many coping techniques. But it is hard to speak when you are not comfortable with yourself, and when society makes you feel unsafe. I cannot talk about selective mutism without talking about my experience of being queer, and being closeted. They are tied together. Activist Mia Mingus says, “intersectionality is a big fancy word for our lives.”

What does selective mutism feel like? People talk about a flight or fight response to danger. This is a third response, a “freeze” response. The body senses danger, although the source is unclear, and the body freezes. Talking is impossible. Even thinking becomes different, slowed, unclear. “How can I get myself out of this situation?” is usually what my brain is focusing on, but often that thought is in conflict with some other need or desire like wanting to be at a party or needing to answer a question directed at me. It is a terrible feeling, a deer-in-headlights feeling. I want to escape, but I can’t figure out how, I can’t figure out what is even going on. As I have learned more and more about this I have learned to simply feel the anxiety, feel it in my body and my throat, and not try to think so hard, try not to focus on words, which often do not work well for me in times of high anxiety.

What helps? Getting away from words and looking at images helps. Doing things that root me in my body helps, such as holding my hands under hot water. Writing out whatever is bothering me helps tremendously. And, importantly, I need to notice when it is happening. I have had this all my life; it’s my normal, after all, so I don’t always notice when I’m being anxiously quiet or peacefully quiet. I don’t always notice if there is something important in my life that I am not talking about. I don’t think this is just a selective mute thing: in a repressive culture, there are plenty of important things we just don’t talk about, for all sorts of reasons. This might be because to speak about them makes the thing more real; to speak might make other people uncomfortable or angry or bored; to speak might make myself vulnerable, because someone could use my words against me. Speaking is dangerous, and silence is a naturally protective stance. The body knows this, the throat closes.

Thankfully, the fingers don’t, the fingers can still type. Writing about my life is practice for talking about my life. It is worlds easier.

Speaking is a political and personal act. I want to get better at it, I want to value my own voice and what I have to say. I am taking baby steps in this direction. I am, strangely enough, good at public speaking as long as I don’t have to talk about myself, or something too personally connected to myself. I do better at speaking when my role is defined, such as in academic or club environments. I have read interviews of actors and other performers saying similar things, that the stage or screen is the only place they are comfortable speaking, because they are playing someone else, not themselves.

In all the reading I have done about selective mutism, on blogs, in scientific articles, on awareness websites, all the focus is on diagnosis, treatment, therapy. Don’t get me wrong, I think these things are great. But what I don’t understand is the lack of discussion on how to live well with the disorder. The social justice model of disability has taught me many things, and one of those things is that I don’t necessarily need to be cured. I can seek accommodation for my disabilities and live well with them. Why not teach kids with SM sign language? Why not let them type or write their responses to questions? Why do we privilege speech so highly? Other forms of communication are just as useful, and sometimes better. There are many forms of self expression. Words are just one kind, and speech is just one iteration.
About Sasha Feather

Sasha likes science fiction and fantasy, horses, and coats. View all posts by Sasha Feather →

20 thoughts on “Selective Mutism”
( comments from the blog )

In the 1980s, my family had a black rotary phone that sat on the wall in the corner of the kitchen. I remember learning about 911, and how we joked that it would be faster to dial 111, as the 9 had to go all the way around the circle and back. The dial made a neat noise, sort of a rattle.

The phone had a little counter where the phone book and various papers sat, and below that, a square metal grate through which hot air came into the kitchen. This was a great place to sit: warm air on my back, a cozy little cubby, and a good view of whatever was going on in the kitchen. My mom would talk on the phone and the long spiral cord stretched out. I'd wrap a bit of the cord around my fingers.

I remember getting caller ID and using *69, which would tell you the phone number for the previous incoming call. For a little while, we had calling cards, for long-distance phone calls. I rarely if ever used a phone booth.

I don't think I ever really liked talking on the phone the way that some people do. It was fine, just a necessary task rather than a pleasure. In contrast, I took to the internet. In high school and college I made friends on Bulletin Boards, chatted with classmates on AIM (AOL instant messenger), and even made a rudimentary website for myself using HTML. The internet was so visual and colorful; absolutely mesmerizing.

I got my first cell phone in graduate school, when I spent a summer in Iowa doing research in 2004. It was a flip phone, which I loved because it looked like a Star Trek communicator. I learned to keep it on all the time and plug it in at night. I learned to leave it in the car if I went to a movie, because if I turned it off, I would forget to turn it back on. The one phone call that stands out in my memory is talking to my Dad, who had just watched the Democratic National Congress on TV, where Barack Obama spoke. "Talk about the next president!" he said.

I eventually lost my flip phone, and got one that had a keyboard. My girlfriend at the time was pleased, because now I could text her back right away. It no longer took me 5 minutes to compose a text using the number pad. This was 2010.

My last non-smart phone, also one with a sliding key board, started to fall apart from wear and tear in 2018. It permanently turned itself to vibrate-only, and the space bar key wore out. It's time to get with the future, I thought. It's time for a smart phone.

My friend got me a smart phone through a program called SafeLink. It's a free phone. I've had nothing but problems with it. A few weeks ago, I came back from the dog park and noticed something going on at the neighbor's house. My neighbor's father was having a seizure on the front step. "Please help!" she shouted. "My phone won't turn on!" I ran inside and grabbed my phone. I ran back outside and dialed 911. The call dropped. (Cell phones, they told us, were the way to go. They'd be great in emergencies!) I was able to call back, and my neighbor was able to get her phone working.

This was an anxiety-inducing event. This event, along with a few other problems, has meant my phone phobia has gotten worse and I've developed a hostile relationship to this object. I've been largely unable to make phone calls for months, which has been a real problem.

When I started a new job, I noticed that I was able to make phone calls from the desk phone. It simply feels different than using a cell phone. The cell phone disappears from my view when I hold it to my ear, so it feels like I'm talking to the air. It's the opposite of a visual experience. Talking on a cell phone in particular feels unmoored, distant, adrift; I'm a person that likes to feel grounded.

I admit I do enjoy having a pocket computer (see today's Dinosaur comics: http://www.qwantz.com/index.php?comic=3319), for things like Google maps, but I don't enjoy having a "smart phone" because it doesn't work as a phone. I want to go back to a house phone. Perhaps this is party because I those warm memories of the heating vent and the long spiral cord, of listening to my mom talk to her friends. Of my family gently arguing over who is going to be the one to call and order food. The sturdiness of the object itself, they way you can tilt your head and hold the phone between your ear and your shoulder, if you need both your hands free.

Objects in our lives are imbued with emotion. I want some of those warm emotions around the tools I use to communicate. I have such feelings with computers. Writing to communicate-- via email or twitter or blog post-- is so easy for me that I barely have to think about it. I imagine phones are like this for other people, though admittedly it's hard to really imagine what that feels like.

(Cross-posted)

Saw this on Tumblr and posting it here as a writing / blogging challenge:

The Audre Lorde questionnaire to oneself.

1. what are the words you do not have yet? [Or, “for what do you not have words, yet?”]

2. What do you need to say? [list as many things as necessary]

3. What are the tyrannies you swallow day by day and attempt to make your own, until you will sicken and die of them, still in silence? [List as many as necessary today. Then write a new list tomorrow. And the day after.]

4 If we have been socialized to respect fear more than our own need for language, ask yourself: “What’s the worst that could happen to me if I tell this truth?” [so, answer this today. and everyday.]

I am reading a series of books about Alvin Ho by Lenore Look. These are kids' chapter books for young grade school kids and they are GREAT. Delightfully illustrated by Leuyen Pham, they are funny, charming books about Alvin, his family, friends and adventures. There are 4 books so far, called things like "Alivn Ho: Allergic to Girls, School, and other Scary Things."

I picked them up from the library because I saw them on a list of books about disability. Alvin is "scared of everything" and he can't talk in school (he has selective mutism). The books take this problem seriously without heaping pity on him, indeed they find the humor in the situation. They are from Alvin's perspective, and he talks about his everyday challenges trying to make friends at school, getting into trouble with his siblings, etc. He has a PDK (personal disaster kit) made from an old tackle box and filled with band-aid, a compass, and hand-written instructions for surviving difficult situations. He has a good family including his dog and grandparents. (See the glossary in the back for definitions of gunggung, etc.) Alvin is American-born Chinese and his culture is also part of the story.

I have been recommending these books to everyone! They are super great! So far these are the first books I've read with a character who has selective mutism and they exceed my expectations.

I wrote something!

Selective Mustism at FWD/Feminists with Disabilities

Feel free to comment there or at Dreamwidth or at the new facebook page (but don't use my real name if you know it!).