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.

A New Branch of Government

Maybe I just missed it in my research, but I want to start a section of municiple government that looks into local bylaws regarding disability.

What would that cover? Things like industry complying with laws that govern accessibility. Resource management for individules. Set up and manage wheelchair transportation.

Yes: I know this would govern a small population in any city.
Yes: I realize that a good portion of what I am proposing should be set up by private companies and it DOESN’T exist right now because the demand is so low.

The idea that this branch doesn’t even exist*, again, upsets me very much. I am more than willing to take up the mantle if no one else is. In the case where it does exist: please give me the information for me to, at least, check in: to see if there is anything I can do. I have mentioned in this blog before, but I want to be a contact for people. I have little to offer, in the way of legal connections. Sometimes, all you need is a helping hand. I feel as if the connections I DO have are very solid, and a few are mildly ignored.

If I had unlimited money, and political power, I would create accessible housing options. As it stands, there is very little in this region. Actually, there seems to be very little in most, if not all, regions. My wife and I have been looking and, unless we want to go back into an apartment (which we don’t), there is always at least 2 reasons not to keep looking. It’s disheartening. It’s depressing.

I want to take action assuming that I will not be in the chair forever. This has become more of a passion thing, for me, and if I see no return (but break even) I’ll still feel like I had a minor win.

A Trite Existence

I wake up to the cat clawing at my face. He wants to be fed, and lets it be known. I have food to feed him, so I do so. I then go into the kitchen to make myself a coffee and some toast.

I am ravaged by guilt.

I am able to afford breakfast. I have pets because I can afford them. Barely, mind you, but I can. I even have a roof over my head and access to necessities. Lucky me.

I am white, male, and straight. It is horrible, but I feel so badly about it. I feel like life dealt me a hand of four kings, and I am complaining because there are no aces in my hand. There are days when I forget there are things for me to take advantage of because one day I need them, simply because I never need them.

I have been in a wheelchair for 6 years. Approximately 1% of people in the world are bound to a chair. So, for every small population that you can think of, that percent of the 1% is all there is in my world.

Does this give me the excuse to feel entitled? Should I just give up on everything and beg the world for hand-outs?

The biggest difference between my situation and most others is that, no, I was not born this way. No, I didn’t put myself in this situation. No, I refuse to look at anyone less for either doing so, or being so.

Yesterday, I found out that my ex-girlfriend has brain damage sustained during a foolish maneuver performed while being a teen aged girl. I have been trying to find a way to compartmentalize that since she informed me. It is not a case of accepting: it’s a fact that she has to deal with. I never would have known if I didn’t ask. We dated when I was 10 or so. It’s not like we’re super close and it would be stupid to have any sort of bad blood.

Accepting. That’s a term that I have a hard time believing that people cannot do. In some situations, being upset or angry will not change a thing. Most things are carved in stone, and refusing to let them become part of your life is detrimental. Refusal to adapt will literally make life unbearable.

I am sorry this post was so scattered. I got thinking about my friend and how gracefully they seemed to adapt to their situation, then I got thinking about the people who have the hardest time accepting my own situation even though it does not involve them. I’ll figure out something more organized soon.

this post is not depressing

The idea that “things will always get better” is a lie.

Hear me out.

It’s not a bad thing that things change. Yes, at times it can seem, or even be, daunting. To wallow in a mindset where things could be better is just as debilitating as the event could be.

Take me being in a wheelchair. Yes, it sucks. Yes, the healthcare system has all but failed me. Yes, I do make attempts to get my body back to where it once was. I never think that things could be better, because the idea of better is so damned subjective.

Will I walk again? No one has been able to give me a conclusive reason why not, so I’m going with a softy ‘probably’ for now. Do I want to? Of course I do. That’s why I try to walk everyday, only held back by the brain damaged I sustained that left me epileptic and has caused my muscles to react strangely to stimulus.

Do I really want things to be better?

Better than what? I have gone on rants discussing how I think the term “better” is bloody horrible. To paraphrase: Better than what? If your response was my current condition, then I have good news for you! I have gotten a lot further in some form of recovery! I mean: I still have brain damage and cannot walk on my own, but to dwell on that fact is futile. I’ll walk when I walk, and I won’t stop doing things until it starts to happen. Then, I’m planning on taking a four week nap and punching cute things endlessly.

I play. Of course there is no end to “improvement.” I do prefer that word over ‘better’ because improvement in quantifiable, but I digress.

So, why make the claim that things don’t get better over time? There is a chance that the person wants help instead of just sweeping proclamations. Instead of basically saying “stop bitching for now”, offer a hand. Even just the offer is all people want some times. If they turn it away, calmly and quietly leave the situation. There is a good chance they just need to vent in a semi-public fashion. Like screaming into the night and your neighbour accidentally hears you. FaceBook is just a way that the police will not get involved for public disturbances.

In eventual conclusion: no. I do not think things will get better. You just get used to the situation around you and learn to cope with it. There is nothing wrong with that. In fact, it means you’re learning! You’re adapting! Just know who you can turn to. There is no shame in asking for help.

Once more for the people in the back:

THERE IS NO SHAME IN ASKING FOR HELP.

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.

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.

some sort of discrimination

I keep silent about certain topics because I am afraid the wrong people will read them. Or because of the social stigma. Or because I do not want to come off as an over-privileged-CIS-white-male who is just complaining because “people don’t get me” or whatever. This is that topic.

As I have bitched about on my social media accounts, and on this very blog, I am epileptic. I am so because of brain damage I received during the attempts to keep me alive. It is more of a nuisance than anything else. I am on meds, which without life becomes a series of snapshots as I pass out unexpectedly and lose about an hour at a time.

So, why do I bring this up?

My father is convinced that my seizures are brought on by poor diet. Yes, poor diet can cause seizures, but they are acute. By that, I mean they limit (if not go away entirely) once your diet corrects itself or you correct your diet. If that is all it takes to fix my brain, I would fix everything I could.

No, my seizures are due to scarring on my brain stem. This was pointed out to me during an EEG test where they examined what happened when I locked up in a controlled environment. Kind of scary in hind sight, but what’s done is done.

So, again: why bring this up?

I am basically bullied and mocked by my father who claims that my reasoning for my seizures is my doing. He claims that I should be able to recover, and there is no medical line of inquiry to back this claim of mine up. Except for that EEG, but that doesn’t count because he wasn’t in the room when it was administered.

My point is that if someone says that a thing is happening to them which you KNOW is happening to them, maybe give them the benefit of the doubt. Yes, there are exceptions that can be found, but when the person is giving valid, MEDICAL reasons for their condition, maybe don’t call them a liar.

It will just make them doubt their own sense of self.