Tag: spoonie

Actors

I haven’t done the research, mostly because I am unsure how to go about it. This is more observation than anything further.

I was watching Parks & Recreation the other day, and I noticed that one of the actors on that play a character in a wheelchair in Superstore. It came as a shock to me, because he portrays someone using a wheelchair so well in Superstore but he obviously does not use one in real life. That realization got me to do MINOR research, and I noticed that most people in chairs are played by able-bodied people.

I mean, I get it. Depending on the nature of why someone is in a wheelchair could cause insurance to get pulled from most shoots. I am also unsure now if any actors are native wheelchair users.

To be clear, the depictions I have seen have been respectful, for the most part. Probably for the same reason I am writing this as carefully as I can. Cheep-shots and bad representation can get you publically demolished, let alone that it is just mean. I would like to think that most writers know that, or at least have not even thought of being horrible because they aren’t horrible people.

In the event that my observations are correct — that there aren’t many/any people in wheelchairs acting, I am curious if that could change. I have come across a couple deaf actors, and at least one or two blind. Does anyone have any leads or names I could look up?

I should probably place a link to my Patreon here. I have been asked a couple of times this week if I have one. I do, and it helps me pay the amounts I need to keep this site running PLUS helps me eat. If you feel like donating, I would very much appreciate it!

The Fog

I want to preface this piece off by mentioning that this is all self-observation. There are a tonne of people a lot smarter than me who have written about the topic of brain fog, so all I can offer to the world is my personal experience with it. Therefore, this should not be taken as a scientific dive into that world. I know I don’t need to say that I am some kind of professional, but I am stating it in the off-chance that someone takes my words as more than a morbid kind of entertainment.

I shouldn’t be writing this. I shouldn’t be doing much outside of watching something — maybe sometime with cats or puppies being stupid. My ability to rationalize is very hampered right now.

I feel drunk, without the physical side-effects. I feel sleepy, but I tried to nap and got nowhere with that. I feel distracted, but hyper focused on the wrong things.

I call it brain-fog because I read that term somewhere and, regardless if it’s a one-for-one description, it is very apt at describing what I am currently feeling. Ironically, I only seem to see it mentioned when I’m in this state and, thus, cannot comprehend what I’m reading.

ISN’T IS GREAT THAT I AM TRYING TO WRITE SOMETHING IN THIS STATE OF MIND?

No amount of caffeine can fix it. As mentioned, I tried to sleep and got no where with the endeavour. I just ate not long ago, and I had a drink of water to see if that would clear things up. Thankfully, when I have experienced this in the past, it only lasts a day or two. I think. I hope. What if this is a permanent state, and sometimes I just notice it more than others?

I hope you enjoyed my last update on my YouTube channel. I know I come off as very rambly, but everything I say is mildly scripted. At least, to a point where I have an idea of how long the final product will be. That’s why I released the last one as a “short”. Now that I have opened up that option for myself, I will probably record a couple more. I will not be releasing them right away as a PodCast, instead opting to smash them together after five or so. That way, if you do follow the audio-only format, you won’t be inundated with short episodes.

Oh, update on the new book: currently sitting at just shy of 22,000 words. It’s half going well. I wanted to be a lot further, but it’s only the first draft that I wanted to be complete by the end of the year. I hope that I can write another 3000 words without succumbing to unnecessary bloat. Then, I will spend far too long making it prettier and longer!

Assumptions

This post might seem like I’m just bitching…

The issue I have been noticing with being disabled is that people expect you to have some sort of grand insight into what social issues there are with being disabled. I have noticed myself being hindered by the idea where not everything I write or vlog about is in relation to me being in a wheelchair, so this post is to people who are in that camp.

The irony of feeling I should be discussing disability issues is the deafness and tragic comedy of the situation.

Okay, that sounds incredibly selfish, so please allow me to put it another way.

I spent 24 years of my life not disabled. I got the meningitis vaccine in high school, and got meningitis anyway. It induced encephalitis, and now I am in a wheelchair and suffer from epilepsy. So, when I start to complain about how “hard life is”, I feel disingenuous. I feel like I am just complaining because my life has hit a road block, and I am worried that my “plight” will take attention away from more important issues. I also feel as though I am far from qualified enough to talk on the social and economic issues at hand.

When someone says that they will not follow or promote my work because it’s not focused enough on disability issues, this is why I find my respect for that person start to drop.

I have lived a great portion of my life under the assumption that I should not let my shortfalls hold me back, and now that I am in a place where my shortfalls have a greater impact, I still hold that advise to a higher regard. Possibly, a higher regard than I should.

My point simply being: if I have a “hot-take” on some social or political issue, I will probably write about it. If I don’t, it either doesn’t impact me or I don’t want to give wrong information. If I am NOT focused enough on things you feel I should be, don’t read my blog. That simple.

You’re Special.

So, it has been far too long since my last update.

I have been ruminating on what I want to write about, new podcasts to record, and dealing with this Hellscape I call life.

Hellscape is probably a bit extreme.

I am just trying to illustrate that I am in another point of flux. So many fantastic things on the horizon, and so many horrible and abusive things until then.

Did you watch my last PodCast? It was to you, so I hope you did. I also spend a very long time scripting it out, considering how short it was.

I have an idea for my next one. My plan is to have it recorded, cut, and published by the eleventh. That would mark one year of me doing that whole thing.

My plan was to examine how society is ableist, but the reading and research is far too much for me to get it done before I want to have the recording done. Instead, I think I will do an opinion piece on similar things, but illustrating how single-serving stores and businesses are in regards to accessibility. That way, the reading is minimal, because I am actually an idiot with too much time on their hands.

Oh, please subscribe to the page if you find this at all interesting. I have heard from a Patreon individual that I don’t give enough updates on there, and they fail to see the point of being subscribed. The Patreon is just a way for me to supplement the costs in relation to keeping this site up-and-running. I know I don’t push it, pretty well at all. I know I don’t pay enough attention over there, and that is something I am hoping to rectify soon. I am completely going by the seat of my pants on all this writing and online marketing BS. I am sorry.

It’s not a competition

Okay, this is a tricky post, but I find myself needing to say something.

There are people who will compare their situation to yours. I am not saying that is OBJECTIVELY a bad thing, but I am saying that there are some situations where you need to just nod a smile.

Now that people have stopped reading a decided that I am just pissing in the wind, allow me to elabourate.

Life is not a competition. If someone is having a bad day, they really do not need to hear about how your day is worse.

COUNTERPOINT: You may have opened the floodgates to someone who just really needs to talk. Maybe they aren’t trying to compete, but they don’t have an avenue to release their pent-up anger.

My point is: there is no winner if you are trying to out-“I have it worse” each other. We’re all in horrible situations all the time. This century has not been kind to a majority of people, and the future is terrifying to anyone who is looking forward. Everyday, there seems to be a study explaining how you are going to die and the blame falls on you OR on someone that you know won’t change anything for your sake.

Somehow, blame and change have become political. It has been proven in the past few weeks regarding Canada’s failure to accept blame for their part in the residential schools across the country. I am not a professional, and I have not done enough reading to feel comfortable pinpointing where to get the most accurate reading material on the topic, but a quick search on the ol’ internet will give you so many hits.

Okay, I need to get off the political soapbox that I have constructed yet stumbled over.

My point still stands, however. Life sucks, so there is no point in competing to have it harder. Maybe, just an idea, instead of putting a fuck-tonne of burden on someone ranting, give them a heads-up that you have a relating issue that you need to talk about. Maybe, give a warning before unloading about something else.

There is always the risk that they will listen.

Nocturnal Seizures

I have to state on the offset that my experience in this is nothing shy of that; my experience. I do not speak for the whole of the seizure “community”, or whatever people who experience seizures go by. I am not a medical expert, and I am simply expressing my experience in regards to the topics that I present in this.

I had a seizure in my sleep last night. I was sleeping, so there are no marks or injuries to share.

“In lieu of physical representation, how am I sure that I suffered an episode?” I hear no one asking. That is a fair question. Without seeing something, how could I be sure that I had a seizure?

When I have a seizure, which is a word that I have never used so many times in a row, my extremities feel heavy. It almost feels like I have a 10kg (~20lbs) weight attached to them. That is how I know that I had a seizure last night: I am sore. I feel like I lifted something way too heavy. My emotions are all messed up thanks to all the chemical fluctuations that I experienced.

With all of that, what can be done for negating seizures at night? From what I have read, which admittedly is probably not enough, there is nothing to do. A large part of the process is management. Someone recommended me CBD, which is not a horrible call. Unfortunately, I have tried CBD. I probably did the process wrong, if you can do that process wrong. From my reading, it does great for preventing chemical seizures, but mine are structural.

WATCH THIS VIDEO.
It debunks a plethora of myths around what to do if you see someone having a seizure. In my research, I have read that epilepsy is far more common than I initially thought. So, watch that, and don’t ruin someone’s day from your ignorance.

/hides soapbox under some stairs

Naked ‘n’ Exposed

I have been spending a majority of my morning applying, again, to Literary Agents.

It is a very small niche in the greater “agent” circle. I have more connection with reps in the music industry which, most of my musician friends will point out, are impossible to get contact with. Yet, somehow, I have steady (if not friendly) contact with at least 6 or 7 A&R reps. but no Literary Agents.

Also, interesting to probably only me: most Literary Agents are much older. That is not a bad thing, but it does speak to how difficult that world is to survive in. I have lost the video to time, but I watched this “day-in-the-life”-eque video. Apparently, or in this case anyway, Literary Agents make roughly 10% signing bonus for every successful sales pitch they make to a publisher? I found that incredibly humbling, and it also explained better in one stat why there are not more agents out there. There is no bloody money in it, and one agent could be stuck reading for days to just decide that person is not worth pursuing.

I’m already jaded due to years in the music industry to the idea of middle-men. Positions that simply exist to funnel the masses away from the big-wigs to “save time”. I understand the allure, but this kind of structure leads to nepotism and gatekeeping in the worst way.

I am starting to see the appeal in Vanity labels. If I was not so horrible at marketing, I would stay independent.

The ironic thing is that this post is me admitting that I need help looking for a literary agent. I mostly want to talk, but I can bring great things to the table!*

*might be a collection of uncooked meat.

this is normal

It turns out that epilepsy is linked to depression. I thought I was just feeling down because, even after seven years of dealing with it, I never quite got okay with being in the wheelchair. My mind also played with the idea that it is because I’m not playing on stage anymore: maybe it’s a kind of withdrawal?

No. As a friend of mine put it, “all this brain stuff effects depression”. See, she also suffers from epilepsy, and has for a very long time I asked her, flat out, if this is “normal” because I knew that, of anyone, she would know.

Actually, I told her my findings and asked her if she felt down and if she could link it to her depression. Well, I asked her all of that in a less rambly way.

I am not using this as a crutch.
I am not putting all past and future actions on this one fact.
I AM looking into it to explain some things I have said to myself. To come up with some sort of reason for things said that I normally would never dream of. This helps me understand and rationalize some of my less-desirable traits that have come to my attention as of late. Not excuse reactions away, but explain why I might say or do something completely out of character.

I feel like I have to express this the most public way I have available to me.

UNFORTUNATELY FOR YOU: that is a blog post.

My reading was from this site, and it really does explain epilepsy and depression in an easy-to-read way.