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Have you the courage to change?

~ gypsy116toast2001 ~ Leave a comment

I was listening to music on YouTube Music. Just a random playlist that is supposed to include all of my tastes (YouTube Music does a pretty good job diversifying my playlists, that’s why I use it, but it definitely does not include all of my tastes. I find I have to actively find something and listen to it before the genre is included, as opposed to just including all of my liked music), and the song Courage to Change by Sia played. I found myself annoyed.

If you aren’t aware, Sia received a lot of backlash, from the autistic community in particular, over her movie Music. Criticism includes her decision to use a non autistic actress for the role of Music (who is an autistic character), the portrayal of said character being inaccurate and coming across as a caricature, Music’s character being used as a prop to support other characters stories, rather than having a story of her own, and the depiction of prone restraint (which is dangerous and can result in death) used as the way to handle Music’s autistic meltdowns.

I agree, the movie is highly problematic. And if you, or anyone feels the need to stop listening to Sia’s music on that basis, I get it. I, however, do not. Personally, I’ve found many of Sia’s songs emotionally cathartic and therefore helpful, for me…. But now I can’t listen to this song without feeling annoyed. I mean, I didn’t know Sia, have you the courage to change?

From an interview that I recently saw in a video from Meg, of I’m Autistic, Now What?, it appears that Sia may have deluded herself into believing that the criticism was not real. That it stemmed from crazy conspiracy theories 🤷 If that is the case, it doesn’t seem an apology or promised changes to the movie (such as a warning or removal of the restraint scenes) is forthcoming.

I am annoyed with my annoyance. What do you think? Is it possible to remove the artist from the art? Or should we distance ourselves from the art itself when the artist is problematic in some way? Please comment, let me know your opinion.

Those Parts Lost Along the Way

~ gypsy116toast2001 ~ Leave a comment

I’m watching the documentary Strip Down, Rise Up on Netflix. I’ve only just started it, so I don’t really have an opinion on the documentary itself as of yet. It’s about a woman who teaches pole dance. She teaches women to pole dance in order to bring them back into their bodies, back to themselves. Reconnecting with their bodies, opening themselves to vulnerability, processing trauma and reawakening their feminine essence.

Oh, it’s bringing up feelings of longing in me. I miss dancing. I miss moving my body, like at all (I currently have almost zero exercise tolerance and it’s been this way for over a decade), but in this moment, especially that way. The slow, sensual, in touch with yourself way.

I’m thinking about it and back in my stripping days, I don’t think I was ever really dancing for the customers. If, by chance I did happen to try, I’m guessing it wasn’t my best work. I started dancing for myself at home. I would put on my boots (yep, the kind with the statuesque heels) and dance in front of a mirror, in my undies, for myself.

This remained my method, even in a club full of people. Internal. Connecting with myself. My sensuality. My sexuality. Me. And, in my opinion, that’s hot as fuck🤷 I miss that. I’m looking forward to getting it back. This, among other parts of myself that have gone missing in the duration of this illness. I’m healing. I believe that. No matter the extent of my physical healing, I will find a way to reclaim those parts of me lost along the way.

Autistic… Just a traumatized INFJ?…No

~ gypsy116toast2001 ~ 1 Comment

Last night, while watching videos on YouTube, I watched a video by Irene at The Thought Spot. Irene shared a comment that she received. The comment read “Hey just wondering how autism shows up for you? You seem very articulate and self aware and have deep empathy. I’m wondering if you perhaps have the INFJ HSP CPTSD COMBO that can look and feel a bit like autism and or ADHD but when we get our nervous system regulated AND our attachment traumas healed we would not qualify for an autism diagnosis ❤️”

Ok, so Irene does a full assessment of the comment, line by line, in her video. You can watch that here. Since she does such a thorough job, I’m not even going to get into the implication that if you are autistic, you can’t be articulate, self aware or have deep empathy (🙄). I only want to touch on my reaction, my internal response to hearing this comment.

I’ve written before that I no longer question whether or not I am autistic. I know that I am. I’ve done enough research, I’ve had my autismness validated by an autistic therapist and I just know, man… My life finally makes sense. I am autistic.

At first, for a long time, I experienced an almost panicky sense of imposter syndrome. Even though I knew…I needed outside validation. What if I was wrong? I can’t claim something this huge and be wrong. That is why I am on a two year waiting list to have an official assessment. Even though I no longer question it and I no longer feel like I need that outside validation, I intend on going through with the assessment so that I will (hopefully…) come up against less backlash from the outside.

Even though I KNOW, and I do know, this comment threw me for a bit of a loop. Imposter syndrome and fear of being wrong struck me hard, briefly. I am an INFJ. Once upon a time, I identified as an HSP, and Lord knows I am highly sensitive. C- PTSD…check. I also know that my nervous system is dysregulated, that is why I’m doing Primal Trust (I do think that most, if not all autistic people would benefit from nervous system regulation work. We the in and process so much information, it serves that better regulation of our nervous systems would help with “symptoms” of autism but autism is not the “symptoms” it is a difference in brain structure). Attachment traumas….again…. check.

After breathing through a bit of panic, I started thinking about it. Irene mentions, in her video, that she was actually at her healthiest when she was diagnosed with autism. Thinking about myself…same. I am most definitely not at my physically healthiest but mental health wise, yeah, I am. I may still have work to do on my attachment wounds (and yes, definitely my nervous system) but I’ve already done a lot of work. Irene says that she believes that if she had sought an autism diagnosis when she was less mentally healthy, she would have been misdiagnosed with OCD and BPD. That is what happened to me. My official diagnosis, back in the day, back when I was very unstable, was Borderline Personality Disorder with Avoidant and Obsessive Compulsive Personality Disorder traits. Healthier does not equal no autism.

The more I thought, the more irritated I felt. My personality type and my trauma has nothing to do with autism traits that have present since my childhood. Especially, if they were present before enough trauma to cause C- PTSD, like the fact that I started speaking abnormally early (first word four months, sentences before one year). My personality type and trauma also has nothing to do with my father (my dad is an INTP) or the much of his family that, now that I know what I’m looking for, seem clearly autistic to me.

Then there is my son. My personality type and trauma does not account for his hand flapping and other very obvious physical stims that have been present his whole life. It does not account for his damn near all encompassing demand avoidance, or his use of echolalia, his food sensitivities, his tendency to hit himself when frustrated, or constant vocal stimming…

It’s funny, this comment, which was meant to be invalidating of Irene’s experience, diagnosis…life, actually ended up reinforcing what I already know that I know. Which is that I an autistic, as is my son. It also highlights just how important autism awareness is, like awareness spread by those who are actually autistic. The misinformation is…*sigh*…it just is….

I will continue to do my part and speak about my experiences. If you are able, I ask I that you do the same.

Art, like beauty, is in the eye of the beholder

~ gypsy116toast2001 ~ Leave a comment

The other day, I wrote of feeling creatively stifled. I wrote about how a situation in my life feels too sensitive to speak about publicly at this point, too raw, too vulnerable (which, by the way, I’ve decided that that situation will go in my book. I’ve planned on writing a memoir for like ever but I get too overwhelmed whenever I think about it. Ideas are coalescing. It will happen.) Anyway, this got me thinking about another way that I feel stifled in the creativity department.

I used to make, what I can only call, selfie art. I would edit selfies in a way that transmuted emotion. In the same way that I use drawing to process and purge myself of emotion, I edited my photos in way that enhanced the emotional experience of said photo.

Like any public art form, I had my fans and of course, my haters. I received criticism for using selfies as an art form. Apparently they can’t be art (bitch, anything can be art. Art, like beauty, is in the eye of the beholder). For posing provocatively (it’s my body, I’ll do with it as I please. Don’t like it, don’t look), and, among other things, being too thin (why people think it’s ok to comment on other bodies is beyond me).

Along with the criticisms of my weight came one comment from a woman who was in her words “fat”. Her claim was that I only shared my photos for attention. That I was only able to do so because of the shape of my body and that I would not do it if I were overweight.

Like all criticism that comes from a place of complete misunderstanding of my intentions, the comment irritated me. My photos, for me, encompassed a wide range of emotion. Some were joyous , and some sensual but the overwhelming majority were expressing the so called “negative” emotions…anger, sadness, abject despair.

Did I feel good about myself in some of my photos? Hell yes, and I don’t see anything wrong with that. I spent years hating myself, that self love was hard fought and well earned (and why is it so horrible for someone to like the way that look? Again, I don’t get it). Again, though, most were a purge of the darkness inside of me. Most were edited in a way that highlighted my flaws. They were intended to make me look “ugly”. The insinuation that I was only sharing for the sake of vanity felt so completely off the mark and I felt, like most of my life, wholly misunderstood.

Here’s the thing, she wasn’t completely wrong. I do not make selfie art anymore. The reason is because I am not currently a fan of my body. Pregnancy + mold toxicity has equalled a lot of weight gain. That said, I didn’t stop making them because I can no longer solicit a response that appeals to my vanity (there is shame around my weight but that’s a whole nother issue). I stopped making selfie art because, for me, “fat” doesn’t translate into the emotions that I need to process and express. What does? Bones. I was very thin at the time I made those photos (underweight actually. Again, illness related. I don’t choose which way it throws me.. under…over…. It’s all illness), and my body was my perfect canvas.

I miss creating selfie art. I am a huge fan of emotional photography. I often see images in life around me and wish I could capture what my eyes see, but nothing works for me in the way that my body did. It just doesn’t.

That said, I did create a few photos of my son the other day. I don’t usually share him in a public forum but I’m making an exception.

This is What Healing Looks Like

~ gypsy116toast2001 ~ Leave a comment

I started Primal Trust a few weeks ago. For anyone that doesn’t know, Primal Trust is a nervous system regulation program. The program talks a lot about the importance of being present. In this moment, here and now, and being ok, no matter what this moment holds. It also speaks to the importance of not constantly scanning the body for symptoms and being in a perpetual state of fix it.

I’ve not yet started the section with the actual tools and I already feel like it’s helping immensely. I was able to go out and “spray for spiders” with my son today. It completely wiped me but… I have not been able to do it since the beginning of this summer.

I mentioned that I got a heart monitor, yesterday. Without going into too much detail, I’m feeling like it is less likely they the issue is with my heart than I was last week. Either way, I am feeling much more confident in my body’s ability to heal. The heart monitor feels like more of a formality at this point. That hasn’t stopped my mind from obsessing and delving into perfectionism.

Yesterday, I felt almost panicked. I felt like I needed to log every single symptom. What time was it exactly? How long did it last… exactly? Did I get all of the symptoms, every way that they expressed?

I don’t want that. It’s taking me out of the moment and putting too much focus on my symptoms. I’m finding this to be very good practice for Primal Trust. Can I feel ok with not being perfect? With the anxiety over wanting to be perfect present? Turns out I can. And maybe this is what healing looks like 🤷

Stifled

~ gypsy116toast2001 ~ Leave a comment

I am feeling torn. When I started this blog, my intent was to write it in the same vein as my old blog, the original Through My Eyes… That would be very open and honest… raw.

While that is still my intent, I’ve had life circumstances that I do not and don’t know if I ever will feel ready to share. This has left me feeling…stunted… Bound up… Like my hands are tied. I feel creatively stifled.

Anyway, for now…I have been having some weird chest pressure for awhile. I’m unsure of the cause and I’m unsure if it relates to the previously mentioned life circumstances. But… Today, I was given a heart monitor that I will wear for a week. I may write more about my symptoms and feelings about this later, or I may not 🤷

stasher bags, period undies, Primal trust and more…

~ gypsy116toast2001 ~ Leave a comment

Just wanted to post a quick update…

I’ve recently bought some Stasher bags so that we can stop using disposable sandwich baggies. They’re a little pricey, so I could only afford to get four. I’ll probably end up getting a few more in the future but this will work well enough for us right now. These are supposed to last for years, so in the long run, the price should be well worth it. I’ll update later and let you know how they’re working out.

In the picture, you might also be able to see that we’ve started composting. I’d still like to do a little research to find out if we have off site composting in my area but as we intend to use it in our garden, we’ve been doing it ourselves. I think many people assume food waste isn’t a big deal (I did). I mean, it’s food, it breaks down, right? What I’ve learned recently, is that food waste doesn’t break down properly in the landfill thus creating methane. Methane is a really potent greenhouse gas so food waste is actually really damaging to the environment.

One last update. I’ve been using period panties for a few years now but I’ve still been using pads as well. I didn’t have enough pairs to change them more than once a day ( the undies). I decided to rectify that problem and bought five more pairs. The ones I already had are Thinx brand. I decided to go with a more environmentally conscious company this time and bought from Kayaness.

Manic Pixie Dream Life

~ gypsy116toast2001 ~ Leave a comment

I saw this meme on Facebook the other day and it got me thinking.

Looking at this through the lens of my life has brought up some things for me. Throughout my life, I have struggled with my ability to connect with others. This is a varied and complex subject, I only want to go into one facet of that currently.

I have always found it easiest to connect to those that I have been in intimate relationship with, i.e. those I’m having sex with. Other than the handful of people that I have been close to for various other reasons…No sex = no connection…

I’ve always assumed that this stemmed from issues relating to early childhood sexual abuse and, you know what? It probably does to some degree but… I’m thinking there’s more to it than that.

I’m thinking at least part of this is related to a form of safety that I felt in these types of relationships. Men were often smitten with me for the very traits that caused most others to actively dislike me…To talk behind my back (and sometimes in front of me, like I was not even there) about how weird I am, how annoying, creepy, odd..unlikeable I am, often leaving me feeling ostracized and isolated even while in the presence of others. With the men that I was “sleeping” with, I felt able to be myself. No need to mask, my strangeness was celebrated. No wonder I felt a connection, right?

There are many articles (like this one here) about the manic pixie dream girl trope and how it is harmful to autistic women and romanticizes the infantilization of autistic traits. As it’s been well written about, I don’t want to go into detail about that here but… I wonder, was this what was happening in my life? While I felt some semblance of safety in being able to express myself more authentically, was the attraction to me actually more of a reduction of my essence into a harmful stereotype? God knows those relationships did not turn out to be healthy for me. What do you think? Is this meme contributing to that stereotype?

Regardless of how I may have felt, I’m not sure I was actually seen in any of those relationships, other than for what I could do for the other, how I made them feel about themselves… I’m curious, is this a common experience for autistic women (especially undiagnosed)? Or is this just me? I’d love to hear your thoughts, your stories.

While pouring my son cereal…

~ gypsy116toast2001 ~ Leave a comment

I know that I have been MIA. I’ve had a life circumstance that I have not wanted to discuss publicly. I am still unclear on when, if ever, and what, if anything, that I will want to share. What I will say, is that I’ve had a recent hospital stay (nothing for anyone to worry about, with any luck the situation has now fully been resolved. If you would like to send any kind of positive energy that that is in fact the case, it would be appreciated) and it’s got me thinking.

I’m feeling curious about communication. How much of what a person “hears” you say is only their interpretation? How much is what they actually heard you say? Your actual words?

During the interview with the doctor at the hospital, the one where they take the “history” of the presenting problem, I had mentioned getting my son breakfast. While looking through the after visit notes in MyChart, I saw that the doctor had written that I had said, “while pouring my son cereal”. I most definitely did not say that. My son has never even tried cereal. That is something that has met full on rejection at anyone’s suggestion. What I did do was put peanut butter and syrup on a chocolate pancake (Kodiak cakes) that his dad had just finished cooking and mixed up his electrolyte/multivitamin/magnesium/mineral concoction that we refer to as “juice”.

There were several other discrepancies too but none that stood out as so blatantly not what I said. I’m not upset about it, it’s not the doctor’s fault, this is how brains work, right? She heard getting breakfast, getting breakfast to her means cereal, in her memory her brain translated my words into pouring cereal, yeah? But it is a bit disturbing.

As someone who has been severely mistranslated in the majority of conversations I’ve had over my life (I’m not joking, nor being hyperbolic. If I’m not talking to someone who is very close to me, there’s a very good chance that I will be misinterpreted), I wonder how much of what we humans hear other people speak is our own translation? Also, I wonder if this is something that neurotypical humans are particularly bad at? Or maybe it relates to the double empathy issue? Like are neurotypicals more likely to mishear, i.e. hear through they’re own experience, a neurodivergent human? Vice versa? How do we take care not to misinterpret by interpreting through our own memories? How do we actually hear each other? Is it possible?

Thoughts? I’d love to hear them in the comments.

Ring Theory – comfort in, dump out

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Once upon a time, a long, long time ago… Not really but I can’t remember exactly when so… I heard of this thing called ring theory. I can’t remember how or where, I may have read about it or watched something that was talking about it. I don’t know. What I do know is that when I heard about it, I thought, yes!!!! This is exactly what I’ve been trying to explain to those around me, all summed up in a neat and tidy, easily understandable package.

I’m just gonna quote this article here, rather then try and explain it myself.

“Susan Silk, a clinical psychologist, and her friend Barry Goldman came up with the concept of Ring Theory, after Susan’s experience with breast cancer. Susan noticed that during her journey with breast cancer, people close to her (as well as, complete strangers), though often well-intentioned, would vent or in an attempt to “fix her situation” by giving their opinions to her. However, what Susan needed most when she was suffering was not their emotions about her experience, but rather their comfort. Hence, the idea of Ring Theory was born. Ring Theory is essentially the idea that a person experiencing trauma and grief needs a specific kind of support during their time of crisis….

The rules of Ring Theory are pretty simple and can be explained in four words, “Comfort In. Dump Out.” Here is how it works. Whoever is in the centermost of the rings gets to whine, complain, cry and vent as much as they want and need to. As Silk states, “That’s the one payoff for being in the center ring.”

The people in the other rings can also express their feelings and concerns. However, the one distinction is with whom they can process those emotions. That is where the concept of “dumping out”, comes into play. The people surrounding the person in the innermost circle express their negative feelings and anxieties only to people in the larger rings. It’s not that you are not allowed to grieve or feel, it is just that venting about your pain to someone who is already feeling their pain deeply is not helpful to you or them.”

You would think that this would be common sense… Or at least I would think that… But apparently it is not. Living with chronic illness, it’s been a common experience for me, to have loved ones vent their fears and the things that suck, basically, about my having this illness, on me. Like WTF? Yes, I understand how my illness affects your life and that that is hard for you but hello… Do you not get how much harder this is for me. I’m the one who has to live with this illness. It feels completely unfair and inappropriate. Like I an being asked to hold others grief while simultaneously trying to process mine. Anyway you go about it, the message is clear. I am a problem, a burden, ruining other people’s lives.

Currently, I’m going through something that I’m not yet ready to talk about publicly. I’ll be fine but I’m in a constant state of stress… confusion, fear, grief, anxiety…trauma. I have been judged, shamed, yelled and screamed at… abandoned, by those who are supposed to love me. Again, I understand the affect on your life but… It isn’t ok to expect me to be able to hold it while I’m processing my own trauma.

I’m basically a walking meltdown at the moment. My tolerance level is beyond miniscule.

*Sigh* Try and remember, if you care about someone, and want to prevent traumatizing then further… comfort in, dump out. Comfort in. Dump out.