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.

Self-Impose

I have given myself until May 10th to have the rough copy of my next book completed. From that day, I have given myself another 6 months (November 10th) to have the second draft completed.

Some may be confused. If I am my own boss, for the moment; why impose restrictions on yourself? Why not just ‘go-with-the-flow’ and let things be done when they are done?

It’s a fair question with a simple answer: if left to my own devices, I would never complete a creative project.

I hear the questions already.
What about the All Cut Up albums?!
I played drums and mixed them. Yes, one could argue that I co-wrote them, but I was always convinced that it was Kevo’s project first. I wanted to release the best thing I could produce for him as fast as he would be happy about it.

What about the other projects you produced?
To reiterate, they were other people’s projects. As much as I would spend hours on mixing and leveling what I could, I just had to make it sound the best that it could. In a couple of cases, that mix was found very quickly. To continue to mix would risk ruining the end result.

What about the first book?
I am going to be doing a PodCast talking about that very soon actually, but I was aided in the fact that it was based in an event. I only had so much creative control when discussing reality.

So, yes: I will have a completed version of the book by November. You have until then to support me on Patreon to ensure that you get listed at the end. Just $1 a month is all I ask!

Dehumanization

First off, I’d like to point out how awesome of a word that is. It almost looks like a death metal band name.

What do I mean by “dehumanization”, I pretend to hear you ask. I simply mean the actions of other reducing your self-esteem, whether that be by accident or on purpose. To be clear, I don’t mean reducing self-esteem like “I’m no pretty”, I am referring to no longer feeling worthy of any sort of human interaction. I mean the kind of state that makes someone no even ask for basic human needs because they don’t feel worth it. I mean locking yourself from the world because you feel like it would be better without you. And, before you ask, I am not talking about how depression and mental state could render that possible. I am talking about physical actions taken to reduce someone to a shell of a human, even if the actions are meant as an innocent gesture of goodwill.

Let’s start with an example: I use a commode. What is a commode? it is basically an indoor outhouse, which I realise how stupid that is to read. We are in the process of building a main floor bathroom, and I use that because I cannot make it to the second floor bathroom.

In order to maintain any semblance of cleanliness, my parents empty it into a traditional toilet. They insist, and continue to insist, that they don’t mind doing so. In fact: they insist that they are completely happy that I continue to do so, and constantly remind me that it is a temporary measure. When I implied one day that it is completely (yay! A proper use of the word of the day!) dehumanizing, they scolded me for being so proud.

Okay, so here is my issue with it. I have to announce when the commode has anything in it, regardless of whether or not there is a meal there. Regardless of whether or not someone is busy. Regardless or not if there is company over.

THERE IS NO NEGATIVE REPERCUSSION BROUGHT ON BY MY FAMILY.

It is a mandatory step that is temporary. I know this, but it does not change the fact that I hate it.

That’s right: I have taken away the burden from those around me and have internalized the shame. I am well aware that they are completely okay with the situation. I am well aware that this is temporary. I am well aware that the shame I feel is only because of my own pride.

It does not change the fact that I find it horrible.

That is one, and maybe the most extreme explanation I could use. I will now make things more general.

Let’s say that a group of friends are going to a festival. Jimmy is hesitant because the loud noise of the crowd, let alone the music, will set off his PTSD, and his reaction could ruin everyone’s time. His friends understand, and decide to not go. They are sympathetic, and kind to him. They constantly reassure him that it is not a big deal.

Nice story, right? Did you see where it went wrong?

Jimmy’s friends should not reassure him after the first time. He knows that he could not go, and he never intended for his friends not to go on his behalf. There constant reassurance makes things worse because he eventually would have just moved on, but now he is being told over and over again how “it’s fine” and that “he should not worry.” Now, he is left with the sinking feeling that it is far from fine. Even though they keep saying it, and they may actually mean it. He might just be running in his head for no reason.

Now, I am not saying that placating someone once, or twice, is not necessary. Quite the opposite, saying something is fine, and reassuring someone that everything is fine, can help. Just know when to move on.

I know that I use a strong example, siting PTSD as the cause for the mental anguish. This can be related to depression, physical limitation, or any other limiter in someone’s life. The best way to deal with it is to initially placate, then only mention things when brought up by the party affected.

Also: know the person. I am saying all of this in a general way, but it does all apply to people who think like me. I am not implying that it would be the same for everyone. I feel as though some over placate, which can be worse than anything.