Tag: seizure

An update on the site

I just updated the PodCast page.

Nothing too exciting, just amended a note on the frequency of updates. I initially put that I was going to do an update on the first of every month, but I have found it difficult to stick to that schedule. Not that it’s too frequency, but instead I am recording them with fervor. I find myself in situations where I am thinking of things that I would rather say in person as opposed to in text.

I am still uploading them as podcast’s on top of the “vlog” styles, because I know there are a few people who prefer that.

I have kind of(?) changed direction. I do them more as a life update, as opposed to my initial plan to stick to the arts. They are still heavily focused on the arts, however. Have I pointed out how important the arts are lately? Seriously: they are important.

I have also been considering dedicating a page to epilepsy and how to deal with. I am woefully underqualified, but I have come across some “important” notes that I feel I need to address: like how you should never put something in the mouth of someone having a seizure. I will leave that to the masses as to whether I write something like that or not. I would need to outsource parts (see aforementioned unqualified), but I feel like I should compile the resources I have. At the very least, I could help save some teeth.

More on Epilepsy

I don’t know why I research this topic. I am always overcome with a feeling of dread as I scroll through diagnoses and side-effects.

On that note: YAY LIVING IN CANADA AND HAVING PRIVILEGE!

ahem… I promise that I will not speak of privilege again.

The fact that Epilepsy is considered a disease according to the WHO is strange. It makes sense when you consider that some epileptics get a viral infection that readjusts the chemistry of the brain. Everyone I have met with epilepsy, however, has had physical brain damage. Maybe it’s just me, but calling that a disease is like saying someone with an amputation has a disease. Disease, to me, is acute.

So, as I was writing the “disease is acute” line, I started trying to define ‘acute’ in my head. Part of me doing that was identifying an acute disease. I noticed quickly how my definition was crap, but I still stand by my statement that epilepsy should be viewed less as a disease and more of a physical impairment.

I’m on a fucking role, I NOW HATE THE TERM PHYSICAL IMPAIRMENT.

You know what I’m getting at.

Anyway, The thing that I really wanted to point out is that epilepsy goes hand-in-hand with a plethora of mental disabilities, including depression and anxiety. I know that I have noticed an uptick in depressive episodes since my first diagnosed seizure. I am using that as a marker because that is when I started tracking. I’m not saying that is when my depression set in, and I am well aware that I might just be depressed because I’m looking for signs of depression.

My point that I was trying to get to, is that over 50 million people worldwide suffer from some form of epilepsy. The article I was reading pointed out how 70% of people cannot get treatment, but I choose to look at the fact that only 30% of people have access to treatment. I, myself, have gone a very long time without a conscious seizure, probably due to the medications that I am on. I don’t even take the largest dose, and I have gone two consecutive days not taking it because I’m an idiot and forgot.

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.

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.

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.

foam {ANEWSIN VOL.11 — Jason Garden}

Edited by Luka Riot

“Come in! Find a seat, or wheel yours in. Whichever works better for you!” 

A woman stands at the head of a rectangular room, beckoning ten or so people to enter. They are all gathered for a meeting to divulge stories and dreams pertaining to seizures. They enter the room one by one, apologizing for brushing against other bodies.

It is a diverse group. Two of them look to be in their early twenties but have no relation to one another. Three look like ex-junkies, with unwashed hair and clothing. One younger girl who is probably around ten finds a seat between two people who one would assume are her parents. Two people in wheelchairs, one is being propelled by a nurse. The other is completely alone and seems despondent. Finally, the last one to enter the room is a flustered looking woman who stumbled in by accident.

It only takes a minute and everyone finds a spot.

“Great! Everyone seems to be comfortable. There is coffee available at the back. Unfortunately, we didn’t have the budget for snacks this week. We’re working on that!” The woman at the front speaks with grace and warmth. “I am Amanda, and everyone in this circle is a peer! By that, I mean that everyone here fights with some form of epilepsy. Some self-inflicted, some not. Life is interesting!”

“Life is a bitch, you mean.” The gentleman in the wheelchair who propelled himself in utters under his breath, with little regard to who hears him.

Amanda’s demeanour does not falter. If anything, she speaks with a heightened determination to sound less patriotic. “To start, I would ask for someone to share why they are epileptic and how that has shaped their existence. How life has been an adventure, and I don’t want to hear a bunch of you looking for pity!”

Awkward murmurs flit around the room.

Amanda looks concerned. This is not the environment that she wanted to have.

“Okay… let’s start with names, then. As I stated, I’m Amanda! Let’s go left. Your turn!”

“Fine.” One of the ‘ex-junkies’ stands. He does not look thrilled to be there.

“I’m Stan. I was drunk, fell down stairs, and now here I am. O’course, there’s a lot more. What you need to know is that I am Stan, and I am here because I was told I need to socialize more.”

With that note, he abruptly sat back down and turned his head to the right. His gaze almost challenged the person next to him to one up him in some way. 

Then, another one of the ex-junkies looked at him with tears in their eyes. “So, you got minor brain damage?”

“Yep. I worked, had a family, dealt with life. The main reason I ended up where I am is because I couldn’t stay conscious through the day. My work decided to relieve me of my position under guise that I wasn’t doing my job anymore. Not because of my injury ‘cause that would be illegal.” His voice cracked. “I was driven out legally. The government jumped in where they could, but I still make half of what I used to.”

Stan fell apart, putting his face deep into his hands. No sound emanated from him, but it was clear from his jumping shoulders that he was crying hard.

“Okay, Stan. This is a safe place, don’t push yourself too much if you can’t.” Amanda stated. She tried so hard to sound delicate. “Thank you for sharing, Stan. That story was heartbreaking and very honest. Who’s next?”

The capable boy in the wheelchair extends his arm while looking at the ground. Amanda realized that he had not even said good morning to anyone around him, and he looks like he came completely alone. Amanda worries, without real reason, that he is alone.

He cleared his throat. “Hello. I am James. I got sick. The result was my brain swelled. It damaged my brain stem. The damage scarred parts of the grey matter.” The group started to murmur with questions and disbelief. “My epilepsy wasn’t even noticed for four years. I passed out and fell out of my chair in front of, who is now, my wife and mother-in-law. They called an ambulance and it was determined to be a seizure.”

“It wasn’t for another few months that the diagnosis came through that I was epileptic. It explains why I failed out of school so tremendously only a year earlier. It explains why I would get so exhausted at times even after I had a solid ten hours of sleep. There was one situation where I remember leaving a classroom, then I am in a wing of the school five minuets away from where I should have been with someone pushing me without permission.” James started to get frantic.

“Here I was, in an apartment that I was living in with the woman of my dreams. All of a sudden, I wasn’t just paraplegic, but epileptic? How was this never caught prior? Why was this ignored for years? Why the f—“

James cleared his throat. “Sorry. Got a bit non-plussed there.” He then wheeled further into the space he made for himself in the circle.

The room goes quiet for a moment. Then, Amanda stands up.

“Thank you, James. That sounds very frustrating. Who’s next?”

“Excuse me!” James shouts from the place is resides in. “Why must you sound so dismissive?”

Amanda looks horrified that someone spoke out against her, regardless of what was said. “You were done, so I’m just moving things along here!”

“You still don’t have to patronize what I said. It came off as dismissive and belittling! How would you like it if you had a bad day and I just responded with ‘who’s next?’ Would that not frustrate the hell out of you? There is a right way and wrong way to go on to the next person.” James was furious. The faces around the room were a mixture of agreement and shock. It was clear that some people saw absolutely nothing wrong with the way Amanda had handled the situation. Some of the other patrons, however, looked just as upset as James was displaying.

“Fuck this and fuck you. I’m going to leave. I’m going to the coffee place down the road, if anyone cares to join me?” James declared to the room. He really seemed like he cared little if he sat alone for the next several hours, or if he made a room full of new friends.

—

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2017

So long, you fucking year. I have had enough of you, and I have never had such ill will towards a year. Even the almost-year I spent in hospital was better than this one, on a political level.

I got married: that was the ONLY good part. Calling it a good part seems like a mild understatement.

So, yes: some of you know that I have been working on my next book. I am pretty sure I mentioned it somewhere in here (here being on this site) and it is going very well. I feel like I am getting close to the end of the first draft, though I am aware that I need to make a few tweeks and additions here and there. Some people have been fantastic enough to read it over and give me opinions. The overall verdict seems to be positive. Either that, or people are just afraid to say ‘give up and get a real job, cripple!’

Overall, I have put about 100 hours into writing so far. I have found old ideas buried deep on my hard drive that I am planning to flush out for the one after. That’s right: I am already planning the book after. Deal with it.

The one thing I am nervous about is my transitions in this new work are harsh, but they are meant to be. I like the sudden change in tone that I have achieved thus far, but I am afraid that, without explanation, it will be too jarring for readers. With that said, the few people that have read it over so far do not complain about that. I am being reminded over and over again that my spelling and grammar could be better. I think I speel well enough, but its hards to edits your own werk.

<insert crowd laughter here>

Other good things that happened this year include: me hitting 100 sales of You’re Not Dead (I really did not think that would happen) and the ten years since my last All Cut Up album came out. I feel that it is the most complicated recording I have made. (over the years, I have seen to have lost the album art. Anyone, for some reason, have it?)

So, let’s recap the good. Got Married, my first album reached the level of being retro, and I did better than I planned and independently selling my first book.

Now, the shitty things.

My best friend (Hank the cat) fell to his death in June.
I wound up in hospital on two occasions following two devastating seizures, the result of which was me being diagnosed as epileptic.
I hit rock-bottom financially and will have to declare bankruptcy in the new year.
Though not bad, music this year did not excite me like it did the year prior.
Willow (my new cat) climbs and destroys everything, thus Christmas will be without a tree this year if my wife and I cannot figure something out (I am writing this on the 19th and, therefore, do not know what is coming up for the season).

There are many more shit things, but even writing this is depressing the fuck out of me. I will schedule this for the last day of this year.

On the music note, I did not even pick up 10 albums that came out this year to make a top 10. I do not even have a 25 most listened to on iTunes because I played the same few songs over and over, and always listened to the whole album. (My list goes Braid, Braid, Braid, Cursive, Cursive, Gorillaz, Braid…)

OH YEAH! I started my Patreon back up recently. Please consider donating something. Also, I noticed that I have offered writing a story about combating dragons for donators who give $2 or more. I have not decided if that will be fighting against dragons, or dragons who fight. Write me and leave an idea of which direction I should go.

~June :: The Worst Month

I don’t like generalizing whole months as one thing. No month is inherently bad or good. This June, however, was especially amazing in how it kick my ass, and it is not over yet.

So, as I mentioned in a previous post, I had a seizure on the first and on the fourteenth. I scarred the shit out of my fiancée, and spent far too long in hospital. Never a fan of hospital stays, medication, or loosing control, I lost all independence for a total of t=24 hours collectively. Normally, this is where I say “one good thing that came about is…” but nothing good came of the event. I am fine, if you were concerned, but very embarrassed. I am actually very reluctant to even bring it up, but I started this blog with transparency in regards to my health. Therefore, seizure notice!

On the evening of the 18th, my cat (Hank) jumped from my balcony and fell seven floors. Wee spent over 12 hours trying to find him before we saw a note in the foyer talking about a small, orange body that was disposed that morning. That was devastating, as can be assured. There are a million excuses. None of them, however, bring my best friend back. I loved him. I miss him. He will forever be missed.

On a less depressing and more annoying part, I am about to celebrate one year of You’re Not Dead being released. I have only moved 95 copies (at time of writing) and I am not sure if I will sell any more this year. Thank you to anyone who bought/read it. I am just disappointed that I did not reach my goal of 100 copies sold in one year.

Eh. First world problems.

New Month

Hi! I hope you are doing well.

I had something huge happen on the first.

I had a seizure.

It was far from a huge deal: my mother-in-law was over and she knew exactly the steps to make sure everything went well.

My fiancee did what she had to, including getting the EMS and calling my parents.

I hate this I hate this I hate this.

Now I am on pills twice a day.

They make me sleepy.