All posts by Syd Chasteen

About Syd Chasteen

"It is not the strength of the body that counts but the strength of the spirit"- J.R.R. Tolkien* Intro to Me- Hi I'm Syd I'm a currently jobless disabled chick (Spina Bifida; Hydrocephalus; Executive Dysfunction) possessed of a manual wheelchair, quick wit and all too reactionary personality. All thoughts and opinions expressed on this blog are mine unless otherwise sourced. Intro to the Blog- I probably know more than I think but not as much as I act like I know. On this blog you'll find lots of apparently controversial ideas like disabled people deserve respect and civil rights. I look forward to sharing my thoughts on the world, issues facing the disability community and my life as a person with a disability. Don't expect a regular posting schedule, I'm neuro divergent not a superhero. -Syd *Maybe, apparently whether Tolkien said it is debated. Follow me on Twitter and Tumblr @BifInMediasRes!

My Recent Contribution to the Indiana Disability Justice Hub’s Call For Submissions

*This is exactly what it says on the tin. I know a lot of people saw this piece on social media already, but I thought sharing it here would make it easier for some others to access.

As always thank you for your continued support of my work. I appreciate everyone who reads, shares and likes my writing, as well as all of you following along with this journey. Much love dear ones.

Endemic Disabled

Since it’s Mental Health Action Day and Global Accessibility Awareness Day it seemed like the perfect time to talk about a few things weighing on my mind lately. This was very nearly a social media post, but would have made for a really long Facebook status. What I need to say is better suited for long form.

To start, there are very real barriers to mental health care for disabled people. Whether those barriers are financial, physical (ie lack of transportation or accommodation) or the inability to find a provider competent in disability issues. This struggle exists for many disabled people especially those who are multiply marginalized. In the wake of so much loss within the disabled community throughout the pandemic, it is more important than ever that disabled people have accessible accommodating mental health care.

On the note of accommodations, those of us fortunate enough to have survived through this pandemic have watched the world seemingly instantaneously become more accessible. For the first time the accommodations we’ve been asking for were needed by the majority. Predictably, we’re now seeing those accommodations slowly disappearing again in the rush to return to normal. This will force a lot of disabled people back into almost total seclusion as we’re forgotten about again.

Which brings me to this, the treatment of the disabled community throughout this pandemic has been horrific. We were written off, once again, as the expected loss. The narrative was peddled of “only the already vulnerable are at risk”, meanwhile many of those who could and should have taken precautions chose their own personal freedoms, sacrificing the rest. Expected loss started to look like accepted, (or maybe even intended?) loss. Regardless, nearly half of covid deaths were members of the disabled community. None of this had to happen the way it did, but that is particularly unforgivable.

So now those of us left, the momentary survivors, where does that put us? Right where we’ve always been, members of a society that routinely forgets, neglects, abuses and does its best to silence us. But if there’s one thing I’ve learned from the disabled community, from my community, it’s we are not so easily forgotten, broken or silenced.

We are long lived. Our history is far reaching and our culture is rich. I am a very small part in all of this but I am grateful to be that part. I am just as grateful for each and every one of my disabled ancestors, elders and peers. I see you. I value you. I love you. Thank you for being. Thank you for continuing to fight for our place in this world.

In Defense

For those who don’t know, I started therapy at the beginning of March. Prior to starting, like months and months prior, I’d been doing a lot of work and research by myself with fairly good results. But I finally reached a point where I realized I needed a professional’s input and direction. Even in the short amount of time since I met my therapist I’ve noticed our sessions are helping me. In the immediate I feel calmer, lighter and over all just more grounded. I’ve also been able to bring up things with her that I’ve experienced without having to worry about judgment or hurt feelings.

I’ve also internally. gone over and over the thought processes of “there’s nothing wrong with you”, “you don’t need therapy”, “nothing that bad ever happened to you”. Then I swing to the opposite end thinking, “ok you definitely need to talk to a professional”, “you need someone who understands this stuff to either validate what you’re thinking or help you figure it out”. By the time I’ve worked my way through all of those arguments it’s therapy day again.

The sessions themselves are taking some getting used to. I go in with the intention of it being more of a conversation than a vent, or me ranting on my soapbox. But anyone who’s met me knows when given any indication of interest, I’ll talk until I run out of things to say or someone stops me (hint it’s never the former). So I feel like I’ve lobbed a ton at this poor person in a very short span of time, some of it heavy personal stuff. There hasn’t really been much on her end. That got me thinking maybe I’m displaying a pattern similar to one I’ve had most of my life.

Growing up, especially with peers, I got into the habit of trying to anticipate how someone was going to react to me or treat me. Then I would aproximate that response first. This manifested in a lot of ways, bringing up flaws or shortcomings, being overly open about personal things, or totally closed off and being incredibly self-deprecating. That last one became a personality feature I’m still trying to turn off.

It was all a defense mechanism, one I still use to this day. But the way I use it has changed. In high school I used to make fun of myself to rob other people of the opportunity. It’s no fun to bully someone about things they’re already openly joking about. Now it more often manifests in giving people too much information or none. They either can’t parse out what they actually wanted so the conversation stops, or they don’t work up to what they were going to say. Whatever requests, opinions, judgments, never come up, if they existed at all.

This is what I think I’ve been doing in therapy and I’m afraid I’m sabotaging myself. Instead of working on specific problems I’m offloading my entire childhood, medical history and family tree. And maybe that’s ok, maybe that’s helpful in its own way. But I can’t help but feel like my therapist isn’t getting the best representation of who I am and I think that’s doing a disservice to us both. I said early on in therapy one of my biggest problems when I’m talking to basically anyone who’s not my husband is having to remind myself I don’t know what they’re thinking. It might be time to actually put that into practice and give people a fighting chance of actually communicating with me.

Cheers To the Freaking Weekend

This is undoubtedly a trivial, probably pointless thing to bring up, especially in the midst of *gestures broadly at the last year*, but I’ve yet to shake this feeling so I’m going to talk about it. There is a strange relief that comes with knowing it’s the weekend, or even the end of the traditional 9-5 work day. I say strange because as an unemployed person those things don’t matter to me the same way they do to a person with a job. I barely know what day of the week it is, let alone the time, because in general it doesn’t matter as much. I’m not held to a schedule, my days aren’t dictated by tasks set by someone else. Still there’s a relief in realizing it’s a Saturday evening.

It took me a while but I finally understood where that relief comes from. For that brief period of time I’m released from thinking and worrying about the next appointment I have to set up or phone call I have to make to a government agency. I don’t have to play middle man between service providers and insurance. I’m also momentarily absolved from the guilt of not completing these tasks. Maybe I forgot, was asleep, not feeling well etc., after business hours and on weekends there’s no point in agonizing. All I can do is try again.

Granted in the age of Covid there’s been much less of this. Things have naturally slowed down or been paused entirely. So rather than periods of constant busy-ness there are spurts of things that need done. I’ve found this easier to handle as well.

To be honest I’ve come to realize, even before quarantining and social distancing, I feel so much more at peace intentionally creating time and space for myself to just be. I place a much greater importance on respecting what my body and mind need to restore themselves. That’s meant setting boundaries, sometimes incorrectly, and removing myself from spaces that take more than they give. It’s far from perfect in practice, and has led to a lot more separation from people than I intended.

But it’s led to me doing important work on myself that I’m hopeful will mean stronger relationships with those close to me. But all that’s for another time, because right now, it’s the weekend.

Convalescence

*** A quick note about the following, first and foremost TRIGGER WARNING FOR MED TRAUMA AND PANIC ATTACKS. Please be gentle with yourselves and don’t read this if it’s going to cause you distress.

Now for some background: this came about after a friend posted a writing prompt on social media with the challenge of writing a scene using all senses but sight; immediately this idea came to mind and I started writing. For the sake of full transparency, what I describe in this piece is not my standard panic attack experience, but one with the most sensory variety. My panic attacks stem most often from med trauma that occurred around five years ago. Most of my triggers related to that period are solely visual so I had to reach back in my brain for something that would allow me to utilize the other senses. One thing I’ve come to realize about trauma is something happening recently creates a reverse domino effect and suddenly everything you supposedly got over comes to the surface. This is apparently good for writing, bad in pretty much every other aspect. I think this is where I assure you I’m in therapy and thank you for reading.

I squeeze my eyes shut tight against the images painting the inside of my eyelids, until there is only blackness. And then I close them tighter, shutting out the blackness until there is nothing. This nothing is heavy, weighing against me with all of the memory I’ve yet to be strong enough to explore, and pain I’ve never let myself or even been able to feel at all. Both managed to leave scars I’ll carry forever.

In this void of nothing I’m held and hold myself. Cold abuzz with the barely controlled frenetic energy of the operating room, of every operating room I’ve ever been in, wraps around me. At the same time I’m aware of my own bed beneath me, the mountain of pillows supporting me and the blankets cocooning me, their warmth tethering me to the now.  Still the smell of antiseptic and a silicone mask fill my nostrils. My pulse thunders in my ears almost in rhythm with the beep of medical equipment. The safe stillness of my home waits just out of reach.

In the same instance I expect to feel my body losing consciousness, my heart pounds harder, faster providing me with another separation from then and now. It’s enough. I bring my wrist to my nose, pressing the inside of my arm against my face, another point of contact as a sharp, earthy musk enters my nostrils. I inhale deeply as the the scent of patchouli on my pulse point cuts through the false stimuli, holding my heart rate hostage before gently returning it to its normal state. I turn my head to the side, still not daring to open my eyes, and my cheek is met with the coolness of my pillow as my nose and forehead collide with one of the army of plushies ready to do battle with me against these flashbacks.

My arm falls across my chest, palm flat against my heart. My other hand reaches out across my weighted blanket and finding purchase clings tightly. A blip of panic spikes but fades quickly as my fingers close around a small, familiar shape. Surfaces bearing raised numbers are joined by salient edges that leave my palm and fingers stinging lightly as my grip tightens. The coldness and weight of my d20 anchor me further to reality. 

I begin to take intentional deep breaths, filling my lungs to aching capacity again and again. My lips part and my mouth opens as if for the first time in days. My tongue is heavy and tastes of sickness. I’m struck by how similar this feels to being extubated.

Taking inventory of the rest of my body reveals even more similarity to being in recovery. My limbs feel heavy, yet weak and flimsy. The rest of me feels empty, completely drained but somehow weighed down. This is all very much akin to how I’ve felt post op. Maybe that’s to be expected. After all, as I have to remind myself too often, this is healing too.

Be A Mushroom – 100th Post

This is my hundredth post to this blog. Six years after first launching it, and a year and a half after I actively started writing here, I’ve made it to a hundred posts. When I first realized I was coming up on a hundred posts, I immediately started thinking of it as this major milestone. I had planned on writing a post full of meaning and depth to really mark the occasion. Dear ones this is not that post.

For one thing, it’s late. I fully intended to close out 2020 with the hundredth post, but as you can see that didn’t happen. I wanted so badly to put a high note out into the world, to finish that hellish year stronger than I started it. But it didn’t work out like that.

It didn’t happen because I left 2020 weaker than I started it, or so I felt at the time. The end of the year, starting around the end of September, has been progressively rougher for me these last few years. Part of it is seasonal, part of it is grief and trauma, but regardless it’s hard. Surprisingly, or perhaps not to those familiar with doing the work, the thing that’s made it hardest the last year or two has been the fact I have made progress. I notice such an incredible difference between the person I was even two years ago and the person I am now.

But despite how proud I am of this growth, I cannot deny how hard it is to be where I am. Yes the good days are better, brighter and so much more frequent. But this makes the bad days so much harder to weather. The end of last year was a major struggle for me, not because I wasn’t trying, not because the meds stopped working. It was hard because, it was.

I’ve been working through so much these last couple of years and within the last few months especially. I’ve researched constantly, taken online assessments and listened to others with similar experiences, trying to get a better understanding of how my brain works and how I can help it work best. I didn’t know it was coming, but the end of last year and the beginning of this year turned out to be a period of intense self discovery and clarity, even more so than coming out or my initial realization of being neurodivergent. There was some struggling to adjust, but I can genuinely say I haven’t felt this level of comfort and peace with who I am before. I feel like I am the most me I’ve ever been.

Getting here has been so much intense work. A friend recently said she didn’t know how I was doing it and still able to function. That’s my secret, there is no function. In most other aspects, my life is a dumpster fire. My house is a wreck near constantly, my hygiene and self care are sporadic at best. As for my relationships (outside of my husband and a handful of other people), there is much work to still be done.

On the subject of relationships, I’ve been thinking recently about how many people know completely different versions of me. Whether they only knew me as a little kid, or as their student, friend etc, they all know these completely separate pieces of me. Even certain relatives, people who have known me my entire life, only see a certain version of who I am. But that also means they all hold different parts of my complete life story. While I can’t help but think that’s incredibly cool, it’s made me realize how much of myself I’ve left with other people.

Part of this process of figuring out things has been actively piecing together the elements of me that are just mine, the pieces of me that, while they may have been affected or created by outside influence, are for me and no one else. This has been intense. And it’s caused me to retreat further and further into my own space as I pieced more and more together. A small, very guilty, part of me is actually grateful for being able to have the space and time afforded by social distancing. There are so many people I miss fiercely. But I’m confident that the next time we meet I will be a stronger happier person than I’ve been in a long time.

I’ve joked often through this period of seclusion that I’m becoming a sentient mushroom. But honestly that’s a fairly accurate analogy. I’ve retreated so deeply and been so far inside myself it’s akin to a mushroom underground before it fruits.

What a lot of people don’t realize (warning cottagecore nerd has entered the chat) is what we consider as a mushroom sprouting is almost the end of its life cycle. Most of the growth, most of the work, to become what we recognize as a mushroom happens deep underground. Not only that, after they’ve spouted there still are underground systems of connective tissue that link a mushroom to other mushrooms. The bonds formed while in this process of growth are maintained and strengthen each individual mushroom later on when they burst from the soil strong, resilient and with the ability to give of themselves so others can take root and grow through the same process.

Basically what I’m saying is I’m a mushroom. I’ve been deep in the darkness, growing and making strong connections with others in similar situations. Now, I’m on the verge of becoming something new and showing the world what I have to give.

If this is where you are right now, or if you find yourself in this position down the road, just know it’s ok. It’s ok to go through periods of darkness and growth, just don’t forget those connections to others. I’ll be one of those connections if you need it. It’s going to be ok. Be a mushroom.

To the Hole In My Home

Note: I originally had the idea for this piece back in November as part of the social media contest “Letters To Home” (h/t Tabitha Brown for the inspiration). But I never got around to writing it, and it’s been in various drafting stages for the last month or so. But here it is finally. I hope you enjoy it.

Deep in the hills of the Ohio River Valley, there is a small town located smack dab on a major highway. In this small town, tucked away in a mostly quiet neighborhood is a little gray house. Inside the house there is a hole.

Well, not a hole as you’re probably thinking of it. This Hole is a small room, with tables, a bookcase, and a TV. There is also a bed, covered in blankets, pillows, plushies and stim toys. In the Hole there is also a Bif.

Hi, I’m the Bif. This is my hole. The plushies are mine. The stim toys are mostly mine. This blanket nest is mine too. This is my hole.

The name of this room started as a joke from a YouTube video. The joke became funnier after I came out. Now I’m the ace in the hole.

But it’s so much more than a hole. At one point a little over a year and a half ago this space was where my husband and I held ourselves together while we tried to figure out how to keep our heads above water after he lost his job. It provided comfort and closeness. Even back then it felt like just the small, safe place that was needed.

After a time it became less of a space he relied on, but somewhere we could still stay close and just be with each other. We still spend evenings and his days off curled up in blankets watching YouTube or playing video games. But for me, I still very much draw comfort and solace from this space, even more than the rest of my house. That’s not to say I dislike our house at all. I love so much about this house that’s become our home.

But this space is different. I’ve spent so much time here. Wrapped up in blankets snuggling plushies on the bad days. Writing and reaching out connecting with people on the good days. I’ve eaten, slept, laughed until I passed out and cried until I wished I would, all in this room. Major mental health breakthroughs have happened, as well as nonverbal phases weathered, all from here.

My husband is my safe space in a person, but this room, the Hole, is just as much my safe space. I’ve felt recently like my days of spending so much time here might be coming to an end. There are things I need to do, life I need to live. But I will forever be grateful to this space for being what I needed for so long.

The Lowest Bar

After four years, the Trump administration ended. This last year alone saw our country dealing with the loss of hundreds of thousands of lives to COVID-19 as the number of cases continues to rise. On top of that increase in violence against African Americans resulted in nationwide protests which were met with more violence. This is what the Biden administration is inheriting. These are the problems President Biden and Vice President Harris must work to rectify.

Regardless of your political stance, whether you are in support of Biden’s politics or not, this country is clearly in need of massive change. And after the last administration, the bar seems set pretty low. Even if Biden’s only accomplishment in the near future is stemming the spread of COVID-19, it will be a huge victory.

That being said I do expect more. I expect attemps at unity and growth for our country. I expect individuals to be made more financially secure and stable. I expect equal rights for marginalization communities to become a priority and a reality.

Maybe I expect too much. All these are only hopes at this point anyway. But for the first time in a while I feel like I have room to hope. I have room to breathe. I have room to just be, if only for right now.

Saying that brings me back to my original thought, because just being is also the lowest bar. But it’s enough. It is ok to just be. It’s a start. I can work with this (low bars are easier to wheelie over if approached correctly).

So I’ll continue to be; I’ll continue to hope. As my country gets back up on it’s feet to finally move forward. When the time comes, and it will, I’ll fight again. I’ll apply pressure in the direction I think things should go. But unlike the last few years I don’t expect to be met with as much resistance.

Google Is Your Friend

Before I get into this topic, a warning: this might get controversial. You ready? Ok…Google is your friend. In fact the internet at large is quite pleasant, especially if what you’re after is information in order to better educate yourself on a topic.

So often I see people online, often members of one or more marginalized community (Black, POC, Indigenous, disabled, LGBTQ+) talking about being approached by a stranger and that stranger proceeding to treat the person as their own personal encyclopedia. If this has ever been you, or if you have ever considered doing this, allow me to reiterate the above. Google is your friend.

I can already hear the naysayers, and you’re right. Like anything else, this isn’t a black or white situation. The internet isn’t all good, but neither is it all bad. The key is understanding how to go about looking for an answer. But I promise you when it comes to learning about marginalized communities doing your own research is far and away the better option.

Firstly Wikipedia is a pretty decent source, but it shouldn’t be your end all be all. Look at the sources cited by the wiki, research those as well. Sites ending with .edu or .org are likely to be more credible than the standard .com. As much as possible, stick to sites run by or for the marginalized community in question.

Look into the history of the community, learn about their struggles and the ways in which they remain marginalized in society. Seek out organizations doing public education on these topics. As much as possible keep in mind that your sources should be as close to or part of the community you are trying to learn about. Read books, watch movies, listen to music created by that community. Find own-voice stories told by members of the community.

Apart from doing this personal education for your own growth, if you do engage with a member of a marginalized community above all just be respectful. Be kind, be courteous, be human. Members of marginalized communities have to do so much just to survive. Taking time to educate you shouldn’t be something they have to deal with. So make an effort to do your own research. Become an ally to marginalized communities and make the world a little better for everyone.

Everything Doesn’t Need To Be A Blog Post

Hello dear ones. I’ve missed you, yes even those of you I’ve never met. I’ve missed this connection, this feeling of reaching people with my writing. And if you’re new to my blog, welcome! I’m the Bif in question. I hope you enjoy what you read here and are able to take something away with you.

As I said I’ve missed this. It’s been weeks since I posted and a few months since I’ve honestly wanted to write. I’m behind on reading as well. Fellow bloggers I see you and I will catch up with your work, I promise. There are some personal reasons for my absence, but I’ll get into those in other posts. For now, I just want to talk about the act of writing itself.

So much of my time is spent drafting new content in my head, or rolling new ideas around. A problem I run into a lot is deciding whether an idea I have is actually worth turning into a blog post. Sometimes as soon as I start workshpopping an idea I’ll realize there’s not enough there to work with. This can sometimes lead to me combining ideas together to make a more cohesive piece, other times it’s more of a struggle. But a lesson I’m actively trying to put into practice is everything doesn’t need to be a blog post.

This is something I really struggle with for several reasons. One is the drive to make as much content as possible. I have readers who enjoy reading my work and so naturally I want to give them as much quality content as possible. Quality is my next issue. I’m only capable of creating a certain amount of quality content each month. Judging by my analytics that amount is about one less than gets read consistently every month.

This tells me I’m hitting the mark on almost every post but one that I put out in a month. So why is that? Frankly I don’t have an answer for that. Maybe it’s my writing schedule making it so one post is rushed, or not as polished, or maybe just not interesting. I don’t know.

I do know my posting schedule is an issue. I almost consistently publish all of a month’s posts inside the last week or several days of the month. Hint, hint I’m doing it again for this month. I don’t mean to, but for whatever reason that’s how things shake out.

One result of this is I stay behind on topics currently affecting my community. This is the main reason I don’t do current events style posts very often. I regularly miss the window for talking about a subject because by the time I’m ready it’s no longer relevant or I’m just parroting someone else.

I don’t know the reason for saying all of this honestly. Except maybe to say I know my readers deserve better. I deserve better. I hope in the coming year I’m able to hold myself to a slightly higher standard. Regardless, I’m so incredibly grateful to have you all along for the journey.