Tag: epilepsy

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.

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

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.

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.

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.