Tag: cripplepunk

Not Dead Day

Today marks nine years since my first public announcement of my surviving. I made that sound mildly hyperbolic, I assure you that I am downplaying for dramatic effect.

I will recap the day even though I think I did a decent job describing it in my book for those of you who have not read it yet.

Basically, as far as the world outside of my direct circles were concerned, I died on or around my 25th birthday. Imagine the confusion when I post on my FaceBook “Alive and kicking in Hamilton”.

What I don’t think I have discussed, that was a bit of black humour, on my part. I was already fit with a wheelchair. In fact, at that moment, I was still considered a quadriplegic. The simple message I sent to my friends and family took me almost an hour to construct. Yes, I had most of my arm functions back, but I was still sloppy and shaky as I acclimatized to the situation. There was still a fair amount of shell-shock, regardless of the fact that I had been conscious for the last four months.

After nine years, I have to thank my family and friends who have stuck by my side. I have to thank the few people who keep reading my updates. I have to thank the people who have bought my book and read it. I have to thank the people who haven’t given up on me.

I love you.

ooops hiatus.

I just made the realization regarding how long it has been since my last actual blog post, and not just me advertising the vlog and whatnot.
(while I’m on the topic, please subscribe)

Allow me to take your time to remind you that my book is available on Amazon and a few other places.

If you have already picked up a copy, please remember to leave a review! Even just some-number-of-stars and no text is fantastic. It really does help the recommendation algorithm, if such a thing exists. Plus, if I sell just 3000 copies, I can afford to release my next book, which is already complete! Also, I started another one. So, that puts my current list of WIP’s to 3, which is both intimidating and awkward, yet interesting and exciting!

Anyway, I will be taking the rest of the year to catch up on stuff and HOPEFULLY get my shit together.

Have a great festive season, and may your New Years be exciting (in a good way).

Unnamed Podcast 38

I have decided that I am going to number each one of these until I hit 50. Then, we’ll see.

The audio on this post is a bit strange because I had a finger overtop of the microphone. I have new ideas for future recordings where that is less likely to be an issue.

Regardless, I have a link in the video to another video that I truly recommend.

I hint at big news later, and I plan on holding myself to that. It also implies that I am not going to share the important information until I have all parts in order.

It’s okay

There seems to be an ephasis to feel fantastic all the time, so please allow me to state why that is not a great thing.

To clarify: you should not live in a constant state of depression. To assume that you are broken because you are having an off-day is wrong, though. You need peeks and valleys in your adventure through life.

The way I look at it is that you need a 1 out of 10 day to make the 7 actually matter. If every day is a 7, it becomes a new 1. If the worst thing that has happened to you is you forgot to stop the toaster on time, then the suprising death of a friend is going to hit harder than it should. All of a sudden, that bad day is going to become the worst thing ever.

Again, living every day at a 1 is not great. You should talk to someone (whether it be a friend or a family member) if you cannot seem to shake a funk. However, if you fluctuate your emotions on a regular basis, I am under the impression that you are healthy.

No, I don’t have sources. I am not a professional on this topic, and I make no illusions that I am. I do think that being sad for a day or two is healthy. Getting unreasonably angry from time to time is normal. No one should ever live in a state of bliss all of the time. There have been many dystopian novels that emphasise that idea. Look at Brave New World, in particular, to see how such an existance could effect civilization.

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.

The Dream

Yes, everyone dreams. This is not a revelation to me. I am well aware, though I rarely remember them, I do dream every night.

As mentioned, I rarely remember my dreams. In the initial release of my book, I made it seem like I had fantastical dreams that were all-encompassing: I used them to explain my mental state at that moment. They were a great way for me to illustrate the disconnect between where I was and where I thought I should be.

I jettisoned them in the re-release because I felt like the short stories I included better demonstrated the emotion that I was trying to create.

My point that I am trying to get as is that dreams play very little in my day-to-day. I have a very pragmatic look at them, and I cannot accept that they have any greater importance than just “your” brain trying to grapple with the occurences of the day.

Last night, I had a very realistic dream where I was walking around.

I have to state it that way to drive home the fact that it was nothing more than “I was walking.” I wasn’t walking anywhere, in particular. I wasn’t walking in some grandiose fashion, there wasn’t a really cool soundtrack in the background, and there wasn’t even fanfare. I was just walking.

In my dream, I remember that it was a big deal. I remember looking at my wife and gesturing that I was doing it on my own. It wasn’t far, just down a hall. I stopped when the dream ended, and there was no follow up. I just had to tell “you” because I had to tell someone.

Thank you for joining me on this adventure, I guess?

You don’t need to see.

Okay, this sounds like a no-brainer to me, but maybe I’m biased.

If I you don’t see something, it does not mean that it did not happen. We cannot see electricity powering a device, we cannot see water moving through pipes, and we do not see our body metabolising energy. All of these things happen in the background and we do not question their existence.

With all of these things in mind: if someone says they did their recommended exercise for the day, BELIEVE THEM.

I have been, for months, dealing with people in my life not believing me when I say that I did ‘x’. I am just going to put ‘x’ because there are many different things that have been brought to question.

No, there is not always physical proof that ‘x’ happened, but it did. My promise should be enough. Especially when it involves a thing that only benefits me.

I get it: people have an interest in me walking again. People have this idealised fantasy where everything is the same as it was seven years ago. Well; news flash! Even if I walked TOMORROW I might never be able to get my license back. Even if I walked TOMORROW I could be turned away from my old job. In that situation, I would come out much further behind than where I am now.

Now, let’s play positive-guy for this paragraph. Assuming that I did my exercises proper and everything went the way half the medical community says that it should, I am still six weeks off ON THE SHORT END of being able to kind of walk. Assuming my medication continues to work as predicted and my body does not create some sort of immunity, I could avoid seizures wrecking my day, but they are to be a constant in my life.

I didn’t write this as a pity-party for myself. I wrote this on behalf of everyone who feels pressured to do something they are doing already and having no one believe them. I am writing this for everyone that feels overburdened by people who have this strange vested interest in their health, even if it really doesn’t affect them. I am writing this for every person who has been told there is a 5% chance of recovery.

DO IT FOR YOU. NOT FOR THEM.

And for “them”: fuck off. We are doing our best, even if you don’t believe us.

Rest In Peace, my friend

I hate posting “in memorial”s on this page. I always feel like it is just me saying “PITY ME, I’M SAD!” which could not be further from the truth. I feel like this is important because of how important Krista was, to me personally, as well as a fantastic person.

I met Krista in 2008. She worked at a local video game store that my store dealt quite a lot with due to our similar stock and interest. She seemed to be a quiet girl, very knowledgeable and well versed in the world of electronic media. At the time I really did not get to know her well, and I always regretted that.

Fast forward to mid 2019. As far as I knew, I was the only person alive who contracted Viral Meningoencephalitis. I say that with absolutely no pride, as I felt alone and absolutely isolated from everyone I have ever and could ever meet. I wanted to share with someone what experiences I had, and wanted to learn from someone what to expect. As far as my limited research goes, there was no one for me to reach out to.

Shortly after my first book, You’re Not Dead, was released, my friend Michelle reached out. She wanted to get a copy to read to her friend that, as far as I knew, went through a similar ordeal. Fast forward a year, and I finally was put back in touch with Krista. It tuns out that she went through a similar thing because we had similar diagnostics. We had both confounded the medical communities with symptoms that made no sense.

For the next year, we would talk over messengers about what we went through. She, daily, reminded me that what we went through was not a competition. At the time, I was completely confused what she could mean by that. It took me several weeks to realize that, inadvertently, I was trying to compare by competing. By that, I mean that I would say “I suffered more because I went through this” while trying to see if she did something similar.

I am not proud of many things, but I am extremely proud that I had ever met Krista. I will miss her.