An apparent misstep.

I started writing this blog to keep people abreast with my physical situation. Then, I started writing to express myself. For the last year, I have been putting a greater weight on music reviews than I have either the former.

I want to be a resource for the community. The biggest issue where that is concerned: I don’t know what people need. If there was a more direct question, I am sure that I would be able to fill in the necissary steps to complete it. Even if the answer was getting help, I would know where to ask.

Consider this me tapping out of the review world for a little bit. Again, I will be doing them, but space them out more. Kind of like how I used to go about a month between spotlights.

In the meantime, if anyone can think of a particular situation in regards to disability they would like me to illuminate, PLEASE do not hesitate to ask. I think my first revisit to that world will be talking about how horrible air seat cushions are.

Locked In {ANEWSIN VOL. 13 — Jason Garden}

Edited by Luka Riot

“Hello?!”

George screamed into the abyss in front of him. There was an echo, but it was very distant. There was no light; George could not even see his hands in front of his face.

He had no memory of how he ended up being in this place. He was not hurt, so he was not shoved violently down a hole. There was no noticeable smell, so he could not gather hints from that sense. There was only a faint breeze that seemed to come from everywhere.

It was like he was in total sensory isolation. He tried to scream again.

“Hello!”

There was no response. He was alone.

George was not sure how long he had been in that place, but he was starting to get more and more panicked as time went on. 

He did not even have a cell phone on him to check the time. He only guessed that he would not get signal in this place to use it for other reasons.

Suddenly, murmurs. Whispers and hushed voices seemed to be carried throughout the air around him.

“Hey!” George screamed. “Who’s there? Please notice me!”

He no longer cared where he was. He just wanted, or needed, to be noticed. He was alone: trapped in a void away from everything and everyone. A simple “hello” would raise his spirits high. He would then know that he was actually part of the reality around him.

George decided to do a body check, finally. He knew that his eyes, throat, and ears were all intact. He lifted what he was sure would have been an arm, and that felt right. Torso and legs seemed to be in a working order, of sorts. He was going off of feel. There was always a chance that he was impaled and just not feeling the pain for some reason.

The voices were getting louder. Regardless of how scared he was, at least he was warm. Kind of. He was actually more apathetic towards his body temperature, but he was convinced that was because he was a decent temperature.

Suddenly, everything happened.

A feeling of disorientation. There were no motion blurs or sudden visual jolts, just a feeling of complete disassociation with his body. He watched as his eyes opened, and was immediately blinded by the light. Then, figures stood all around him, looking down with faces of excitement and joy.

He was in a hospital. He had been stuck in his head, only mildly aware that there was a world around him. He could account for about an hour, voices made him aware that it had been weeks.

George was frightened. He hurt. His back and his head felt like they had been ripped open and sewn back together several times.

He was naked, but under several sheets. He was still having a hard time figuring out exactly who was around him, but he was sure there were at least five people above him. All the people-shaped outlines looming over his face. Drops of water caressed his brow.

Where was he? Where had he been? What happened to him just before he found himself in that cave?

Slowly, he put his hand on his head.
Slowly, he sat up in bed.
Slowly, he started to lose consciousness again.

Quickly, the shadows of people ran to his aid. Quickly, a code blue was announced overhead. Quickly, he stopped feeling any sort of discomfort.

Another figure was added to the pantheon. This figure was carrying two rectangular shapes in their hands. The figure slammed their might into George, forcing the two shapes into his chest. There was a loud sound, and George felt a surge flow into his chest.

Everything then came to focus. His vision, his hearing, and his breathing all coalesced into what would be described as normal. The figures were no longer just that, they were doctors, nurses, and friends. Sadly, George saw no family in the group. That is when he started to figure out what happened.

He had fallen over in pain almost a month ago. His chest was tight, and the pain caused him to lose conciseness. He could only assume, but he felt confident in assuming that it was a heart attack. He did not dare to assume what caused it, however certain he might think that he is.

The rectangles were defibrillators. His heart had started to palpitate again, and they were used to put everything back on an appropriate rhythm. George started to wonder who or what dictated “appropriate” but was also sure that now was not the time to ask those around him.

Now, George was back. Finally, he was back. He expected an onslaught of questions, but none were asked before everyone had left the room. Now, he was left alone with just one of the figures from earlier. Now, he could tell that it was a doctor. She was probably the doctor who had been with him since moment one.

His chest still hurt, and there was a distinct smell of burnt flesh and hair in the air. Probably due to the event that saved his life. Again.

George wondered if he had ever been pronounced dead during this whole ordeal. He had died once as a younger man: he had been struck by a car and doctors were very unsure if he would pull through. To say that he would get to the age of 30 would just be irresponsible of the medical community, but to say that he had no chance was just as arrogant. To dismiss the abilities of everyone who was trying to save his life the first time was naive. George and his family took great pride in him walking out of the hospital that day.

Even George, through his clouded judgement and uncertainty as to what exactly is going on, was not sure if today would have the same outcome as before. At least that time he still had his wits about him. He could feel himself forgetting his family, friends, and sense of self.

IMPORTANT [or, the long name; why cripple punk is important]

Today, I did something I should never have done. Today, I looked up the keyword ‘wheelchair’ on Twitter.

Sound innocuous, right? Should just be the occasional stupid thing followed by a bunch of like-minded people discussing wheelchairs, right?

WRONG.

The first page was entirely animals in homemade chairs. Pretty cool designs. Really nifty for the “I love animals” crowd. Then, it was almost a page of tech surrounding wheelchairs. Prototypes, interesting chair designs, cars adapted for wheelchairs… that kind of thing.

I would argue for these kinds of posts existing. They are general knowledge, to an extent. That is not to argue how adorable that puppy is running for, in some cases, the first time in its life.

There was the standard frilly “you can do it” bullshit that seems to be everywhere when dealing with wheelchairs. I get the message, but the words do not fix anything. Plus, it places an unfair standard on those who will never be able to be what you think they should get over. These lines say nothing for those born with physical or mental disabilities…

Again, nice try. The intention is there, and though I personally get frustrated by such public displays, they do not harm anyone. I have never heard someone in a wheelchair get actually offended by these sentiments. Like always, feel free to prove me wrong in comments or whatever.

Then, there was a collection of updates that I was not mentally prepared for, and it corrupted everything I saw prior.

Update after update of companies announcing that they are finally wheelchair accessible. It was all like they wanted a pat on the back or some sort of award for recognizing people as people. It was incredibly hollow and self-serving. People in wheelchairs are, well, people. If you have to MAKE your location wheelchair accessible, you have to MAKE your store/company/whatever usable to a percent of the general public.

Yes, I realize that there in a silly small percent of people in wheelchairs. I will, however, point out that there is a large percent of people with mobility aids. Announcing that your building finally has accessible parking should not effect your bottom line, not having accessible parking should be hurting your bottom line. Finally catching up with the rest of society does not make for a good image. As stupid as it sounds, it’s the wheelchair COMMUNITY. If your place of business is not acceptably accessible, we do talk to one another. We will pass that information to friends, family, and neighbours. We don’t like being patronized, and we REALLY don’t like being singled out because of the wheelchair.

I might be putting my opinion as fact, I am well aware of that. This does not, however, mean that my opinion is only share by me. How many people remain silent because they do not have a soap-box to stand on, or legs to do so?

Chair Movement!

This is a post that I have wanted to write for a while.

I was recently chastised for having my hands in the wrong position when moving around. I would like to make it clear that it was by accident, but I do appreciate the note.

It seems like a strange thing. Why would it matter where you put your hands? Should it not be okay to have your hands anywhere as long as it is comfortable?

SURPRISE! It matters a lot. Or, it does if you want to keep your arms in use for a long time, anyway. Please, allow me to educate. I would like to add that this is all experience based, though I will be following up with people with a physio background to make sure that I don’t make egregious errors.

Imagine the wheel is the face of a clock. To propel yourself forward, your hands should be at 945-10. Why so far back? If you keep pushing from 11-1, you are not allowing the full motion of your arms to play out. You are forcing them to start part way through a natural motion and, therefore, will wear out your shoulder joint faster than if you start further back.

This is something that was mentioned to me early in my wheelchair experience, and I thought I was doing a fine job of it. However, I met with an occupational therapist the other day and she pointed out that I start my push too far forward.

Now, I was doing that in the apartment. It is hard to say that I do that when out and about, as it is easier to gain speed when pushing from further back. Having your hands closer to twelve makes it easier for small maneuvers and quick turns. This does not excuse where you have your hands. The possibility of muscle and join damage is present, anyway.

Advantages of having your hands at the right spot? As I mentioned before, speed. There is the vane advantage of improving pectoral muscles. This all does not ignore NOT NEEDING SHOULDER SURGERY!

Last happy update for a month! So, I will leave you with a warning. The next four updates are far from happy. I think the posts are important, but I realize the potential impact they can leave on a person. If you are one who has a hard time with dark ideas and depressing facts, I understand if you don’t check back in. Normal updates start back in June. If this warning has not scared you away, I hope you find the following four updates and funny as I do!

Please consider donating to my GoFundMe or Patreon.

At the risk of being hated…

I am writing this paragraph to reiterate that I am, in no capacity, a medical professional. What I wrote below is in the same vein as opinion, and points are speculation at worst, and loose unsubstantiated conversation bits at best. That goes for any medical opinions I have given on this site. There have been many questions regarding my credentials and sources over the years, and I would just like to remind you that I don’t have either.

I am writing this even though there is a great risk of me being labeled more harshly than is necessary. As much as I am going to make this statement in a blunt fashion, the intent is not to offend, but to squash assumptions and set records straight.

I got the meningitis vaccine. If you did not, and got the sickness (and wear that fact as pride), I have little sympathy for you.

I am not saying that I am pro-vaccine. I am far from an anti-vaccer. For instance, I have every shot, but I refuse to get the flu vaccine. I don’t trust it, I get the importance of what they are trying to do, but I cannot see it as necessary right now. Maybe in a few years I will have my mind changed, but for the time being, that is my stance. 

With the meningitis vaccine, I know my position is precarious and seems backwards. It is steeped in half research and questions that no one asked. I realize that I am far from a professional, but hear me out.

Apparently, the vaccine that is given in high schools across Canada is specifically against bacterial menengitis. The assumption is that I was stricken with a viral strain, and the vaccine will not work. Therefore, my attempts to pre-emptively deal with things were thwarted by unfortunate chance. 

What is my point? I just want, maybe even need, to express the importance of mitigating damages. I tried, and was unsuccessful. When I hear someone complaining even though they never tried in the first place, I get very frustrated.

I should not use this platform as a soap box.

I felt like I had to get this out. If you took that risk and didn’t get that shot, that’s okay. I still love you, and I wish you the best of health. If something does go wrong, reacting with surprise is not the proper way to go about things.

Ableism : Social v. Institutional

I got about 200 words deep into this topic, when I decided to look back at my catalogue to see if I had done something like this before. I had. I feel silly.

One thing that I did not talk about (because I was not faced with it yet) are the fucking cabs in this city.

I, to those who did not realize, used to live in Hamilton. Now, I live in Burlington. You can actually see Hamilton downtown from my living room window if you can look past all the buildings.

It’s behind Ikea.

What I did not and could never expect was how different the cabs were. Regardless of time, Hamilton was there to make sure you had a wheelchair taxi at your disposal. Four AM or four PM, you were covered.

Burlington, on the other hand, almost pretends that people in wheelchairs do not exist after dark. Accessible cabs do not exist after eleven, forcing you just to give up and go to bed.

Stores have wheelchair ramps and doors, but it feels like it is out of obligation. Rooms are never designed to fit a chair, main door theshholds are always too large, and everything is horrible.

But, enough of me wincing on about that. What about political?

There are laws in place to protect people who find themselves, whether acute or not, in a wheelchair. Are they enforced? Fuck no. There are government buildings where automatic doors open the wrong way, there are a plethora of ramps that are to steep, and God Forbid you have multiple disabilities: the job market cannot handle it.

For example, I am paraplegic and epileptic. I have searched for a job. I wold love a job. My body is too unreliable. No, employers cannot discriminate about your disability here. They can find other avenues, however. They can stress the fact that you cannot leave your post until it is time, health condition be damned. They can point out pitfalls in layout and pose the question as “… but that will not be an issue, right?” The point is taken.

I fully admit that I have a limited scope in dealing with this kind of bull. Between knowing that I am the only disabled person in my building and knowing that, no matter how much I really want to, I cannot go back to my old job, my ego is fractured into one-thousand pieces.

….and do not get started on government assistance. I have had a right bitch of a time getting medical coverage for the two medications I need and STILL do not have any coverage.

What really hurts me, and I double checked that other article, is people who knew me before still assuming I could (at least half) do what I could before.

Or people who never knew me before assuming that I am using my disabilities as a kind of crutch.

Oh, there would be a special place in the afterlife for people like that, if one exists.

NOW THAT I HAVE GOTTEN THAT OFF MY CHEST!

anewsin Publishing is having its first release on the first of July. I have updated the Patreon to include an awesome perk that if you donate just $3 a month, you get the upcoming story early! I hope you like it!

what have i done?

I have rewritten You’re Not Dead for the re-issue due this year. Friessen Press has this thing where you have to pay for re-issue for hard release every two years. I understand it, but, fuck me, is it worth it?

I’m going to go with a ‘yes’ on that question. Like I mentioned, I have rewritten much of it. Most of which was editing grammar mistakes missed by the editor. Some of it was fixing continuity. It was fucking hard having to reread bits and relive other bits. Especially because I am adding an afterwards.

To be clear, my epilepsy has been since day one in the hospital. To ignore it is to ignore part of what the story is trying to tell. The only problem is that it fucks with the timeline by several years. My initial plan was to just highlight what I went through in the ten months, but to truly tell the story I am trying to tell, I have to push everything to nearly 3 years later. I am worried that it is going to get off topic. My worst fear is that it will come off as ramble-y. Check that: more ramble-y that it already was.

Other interesting note: I am sorry to anyone who got a copy in the state that it was in. I have found so many bloody stupid mistakes that I cannot even blame on epilepsy. Mistakes like using the wrong ‘their’ or talking about hw the Hero walks to the car, opens the door, then finishes his coffee and makes his way to the car.

Yes, I know it was my first attempt at writing. I know that I have no clue what I am doing. Yet, I cannot shake the feeling that I am a COMPLETE FUCKING MORON at times.

ON A FUN SIDE-NOTE THAT FINISHING OFF CALLING MYSELF AN ILLITERATE MORON!

I started planning my second book. I had a talk with my publicist. I mentioned how I am terrible at writing one long narrative and find it much easier and I have more fun writing short 1000 word stories. He thought that I should consider releasing a book of short stories for my next project. After finding old story prompts that I wrote back in high school, I can say that I am actually excited to start a venture into this plan!

I have updated my Patreon so a small monthly donation of $5 will guarantee that every two months you will receive a PDF containing whatever I am working on next. Please, consider giving to that. It will help me feed the animals, pay my rent, and make sure this blog stays open. I would love to thank the donators I have had so far. Without them, you would not be able to see this update.

This weeks recommended listening is Chon. Lovely four-piece that combines metal and jazz. I am probably going to be yelled at for putting it that way, but I do not really know how else to describe it. Musicians will cry, everyone else will be swooned by the beautiful sounds.

update; most . of what I talk about above is no longer relevant. More news in the coming weeks

…you will die.

I posed a question to my Facebook the other day: if you had to hear one song and then you died, what would it be?

I never really put any further explanation, nor have I voiced my personal choice. I was just curious how many replies I would get, and what kind of songs people would post.

I found the results of the pole confusing. Granted, I never made it explicit what the circumstances of your death would be. Maybe that is why I found the answers so confounding.

The rules are that once the song ends, you will die immediately. What I had in mind was a gunshot or massive heart attack. This would ensure that there would be no way to recover or survive, and the final song that played would follow you into the void.

I had some interesting replies. One fellow thought that he would break my game and just go with the Song that Doesn’t End (you’re welcome for that link) and from that point he would live forever. With the parameters I placed on the question, I fully understand why he went this way. To him, my official reply is: well played, sir. Well played. Enjoy that song following you around for the remainder of all time.

The other big reply that I got was Queen’s Bohemian Rhapsody. Though, that song is amazing, it is so long. You would be dwelling on the fact that you are going to die for the entire 5:55 that the song goes on for. I do not know about you, but for the almost six minuets it is playing, I would not be able to enjoy it. I would just be cringing and counting until my demise.

That is why my choice would be Mother Night Revisited by Premonitions of War. The song is stupid short (1:21) and it is busy, loud, and distracting. The cacophony it creates would drown out my thoughts of my impending demise and it ends abruptly, not giving me any time to dwell on the fact that it is ending.

Maybe I am just biased, but I want to just cease living, not contemplate my entire life throughout my favourite song.

AMENDMENT:

Well, amendment is a strong word for the situation. More like another idea, or concept, that I would like to share because it is so cool!

The album Transatlanticism by Death Cab for Cutie is one of my favourites of all time. It is dark, cynical, honest, and beautiful. One thing that it does (in the most sneaky way) is open with a machine sound. The album plays and that machine sound seems to stop. Where it gets really cool is that the sound does not actually stop, or even change volume. The sound hovers in the back. It is not fully noticeable again until the very last song where the guitar and vocals clear for a moment to revel that it has been there the entire time. Until then, one may not notice just how invasive the sound has been through the entire album.

Then: it stops.

The album ends, therefore the sound ends. Actually, if you wish to get petty, the sound ends one second before the album does. The silence is deafening. At that moment, you are left to reminisce on every word that was sang up until that point.

I am pretty sure that it was not intentional, but it beautifully demonstrates my view on death. Everything ends abruptly and there is nothing.

Fuck, that sounds bleak.

ANYWAY: I am curious. Please, let me know in the comments what song you would like to die to immediately preceding. Do you have a reason for the choice? What is your take on my choice?

Linda

Linda and I have a very uninteresting history. She is the mother of a friend of mine, and she is/was a regular at the music store I managed.

Being a nurse, she took an interest in everything I have gone through. One would think that once I left hospital, however, her interest would wain. That was far from the case, however. She has stayed in my metaphorical corner. Her support has been fantastic. She has shown my book to a few of her co-workers (which I appreciate) and understands my plights from both an educated and friend level.

There really was no point to me writing this other than I was feeling very particularly thankful of her existence when I wrote this. I will not link to her profiles or give her last name (because that is creepy and weird to do without permission) but I hope that everyone has a Linda-type in their life. We all need someone to just be in our corner when we need them.

An interesting development…

I was told three years ago that I got Viral Meningoencephalitis. The very confusing part to me was the meningitis part: I was vaccinated by meningitis back in high school.

The stupid thing I did was forget the “Viral” part.

Vaccines don’t do anything to viruses. Though, in theory, my system was better equipped for the ensuing onslaught, there was no protecting me from a virus. This also means that what I was afflicted with was not lifestyle but exposure.

I am well aware how silly all this must sound to some of you. I can almost hear the chorus of “no shit..” coming from the masses. This was something never properly explained to me and, therefore, I was very confused.

So, what does this mean?

I HAVE NO IDEA!

It does, however, give me a bit of peace, in a strange way.

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