At the risk of being hated…

I am writing this paragraph to reiterate that I am, in no capacity, a medical professional. What I wrote below is in the same vein as opinion, and points are speculation at worst, and loose unsubstantiated conversation bits at best. That goes for any medical opinions I have given on this site. There have been many questions regarding my credentials and sources over the years, and I would just like to remind you that I don’t have either.

I am writing this even though there is a great risk of me being labeled more harshly than is necessary. As much as I am going to make this statement in a blunt fashion, the intent is not to offend, but to squash assumptions and set records straight.

I got the meningitis vaccine. If you did not, and got the sickness (and wear that fact as pride), I have little sympathy for you.

I am not saying that I am pro-vaccine. I am far from an anti-vaccer. For instance, I have every shot, but I refuse to get the flu vaccine. I don’t trust it, I get the importance of what they are trying to do, but I cannot see it as necessary right now. Maybe in a few years I will have my mind changed, but for the time being, that is my stance. 

With the meningitis vaccine, I know my position is precarious and seems backwards. It is steeped in half research and questions that no one asked. I realize that I am far from a professional, but hear me out.

Apparently, the vaccine that is given in high schools across Canada is specifically against bacterial menengitis. The assumption is that I was stricken with a viral strain, and the vaccine will not work. Therefore, my attempts to pre-emptively deal with things were thwarted by unfortunate chance. 

What is my point? I just want, maybe even need, to express the importance of mitigating damages. I tried, and was unsuccessful. When I hear someone complaining even though they never tried in the first place, I get very frustrated.

I should not use this platform as a soap box.

I felt like I had to get this out. If you took that risk and didn’t get that shot, that’s okay. I still love you, and I wish you the best of health. If something does go wrong, reacting with surprise is not the proper way to go about things.


Seizures & Why I Get Them

What happens when I get a seizure? Can I always identify when it will happen and what happens?

Yes and no. There are a few things that happens physically that I notice, but I have become aware to them instead of them intruding heavily in my life.

I get sleepy. That sounds stupid (I am well aware) but it happens randomly and suddenly. I am still a step or two away from finding out why it happens, but I suspect  hypoglycaemia or something in that same vein. The reason I do think that is it only happens when I have not eaten properly for a few hours.

Everything on that point sounds really silly to me when I type it out, but I can assure you: it is a hassle. Think of how often you go an extra hour not eating because you have to finish something or you have company. I pass out.

What am I doing to mitigate the issue? I drink a pop/soda when I start to feel a bit strange. That is usually enough to hold me over until meal time. Otherwise, I am just eating as much as I can, and exercising.

I have only hurt myself once when I fall over. The other night, I must have gone face first into a desk. I came to with a black eye and a bruise/scrape combination on my arm. Otherwise, there has been no effect outside of loosing some time and being horribly disorientated when I wake up.

I have done a little bit of research into what causes seizures. The case that relates most to me is massive cranial trauma. Since the encephalitis was literally my brain crushing itself against my skull, I am going to assume that is the link to why I have seizures. I feel I am allowed to make assumptions because the specialist I saw actually said ‘yeah… we don’t know why you pass out’ (please note that is paraphrased, not a direct quote).

Anywho, I just thought I would fill everyone in with what I know.

SIDE NOTE: I have my next book mostly done. If you would like to read the rough draft, let me know either in the comments below or on my FaceBook.


Linda and I have a very uninteresting history. She is the mother of a friend of mine, and she is/was a regular at the music store I managed.

Being a nurse, she took an interest in everything I have gone through. One would think that once I left hospital, however, her interest would wain. That was far from the case, however. She has stayed in my metaphorical corner. Her support has been fantastic. She has shown my book to a few of her co-workers (which I appreciate) and understands my plights from both an educated and friend level.

There really was no point to me writing this other than I was feeling very particularly thankful of her existence when I wrote this. I will not link to her profiles or give her last name (because that is creepy and weird to do without permission) but I hope that everyone has a Linda-type in their life. We all need someone to just be in our corner when we need them.

An interesting development…

I was told three years ago that I got Viral Meningoencephalitis. The very confusing part to me was the meningitis part: I was vaccinated by meningitis back in high school.

The stupid thing I did was forget the “Viral” part.

Vaccines don’t do anything to viruses. Though, in theory, my system was better equipped for the ensuing onslaught, there was no protecting me from a virus. This also means that what I was afflicted with was not lifestyle but exposure.

I am well aware how silly all this must sound to some of you. I can almost hear the chorus of “no shit..” coming from the masses. This was something never properly explained to me and, therefore, I was very confused.

So, what does this mean?


It does, however, give me a bit of peace, in a strange way.


Meet Willow

The Seizures

I have had two seizures in two weeks.

The first was, well, on the first. It was violent apparently.

The second was two weeks later. My fiancée was there to make sure I was okay that time.

Not that she wasn’t there the first, I just mean she was left alone the second. Her mother was there the first.

Out of curiosity, I Googled “what is a seizure” this morning. The thing I found most fascinating was how little information there was, and there didn’t seem to need to be much more.

A seizure is when a brain misfires due to increased sodium levels. It can be sever and have major complications, or it can be better described as a nuisance.

Mine appeared to be the latter. I had no noticeable longterm effects, but I went to hospital both times in an ambulance where I stayed in a bed for eight hours both times.

Do you have any clue how uncomfortable the beds in ER are?

Like I said, I am fine. Maybe a bit disheveled, but fine. I am on pills that I take every morning and night that knock me out, but I am fine. How are you?

Does anyone have any good ideas on how to avoid seizures and the like in the future?

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.

Blog #3

I actually forgot the format for the title of blogs and had to do some searching.

Hi there! I have started going down the dark cave that is writing a new book. I’ll let you know what it’s about and how it turns out in a week or two (because even I am not sure). I am currently writing one story based around one character, but I am tossing around the idea of writing several stories and make them all intertwine somehow. Thoughts? Ideas? I have great confidence in what I am doing, but I am worried that I am just trapped in my head.

Otherwise, life has been okay. I am lonely (as Tasha works 8-9 hours 6 days a week) but I have 3 fuzzy friends to keep me company. I am an hour (give or take) from most people I know, and those who can make the trip work a fuck tonne.

I have started pushing myself in new ways. For instance: I currently cannot go from sitting to standing without something to hold onto. To combat this, I have been putting myself in more and more awkward situations and forcing myself to deal with them.

TO BE CLEAR: I am being safe.

I know myself. I know that, if I hit the ground, it could be devastating. To make sure I am okay, my end goal is ALWAYS my wheelchair. I also make sure that my walker is close by. Barring those two things: a surface to get a hold of. Still no luck to bring to light, but I hope to report something soon.

I Wish This Was Known

The stigma exists that people in wheelchairs are just leaching off the system. There is this miasma of assumption and a total disregard for any fact. What is an unfortunate truth is that we are forced out of regular society, crippled by expenses, and are crammed into having car expenses without having the car.

Forced out of regular society? That sounds a bit harsh. Unfortunately, even with laws put into place to make sure everywhere is accessible, there are loop-holes/there are ways around it. Between thresholds being too high to navigate in a chair, to washrooms that are just there to placate those who care, very few places are actually wheelchair friendly. My old tattoo shop is a great example. The only reason I do not have more ink on my flesh right now is the foot-high lift from the road to the door. I do understand the purpose, but it does not change the fact that I cannot go in there. Not right now.

Expenses? Try $60 (CDN) per barring for my front tires. Try the thousands a decent wheelchair costs. Try the fact that there is minor funding through government agencies, but you are still required to pay out of pocket a hefty sum. The base price for the wheelchair I use is $1675. That does not include the REQUIRED custom seat ($458) and the special backing ($535) OR any upgrades and changes that are required in the future. Hell, tire replacements start at $65 a tire. Yes, that is a mandatory change when it comes time to it.

Now, does all this bitching add up to the prices dictated by a car? Hell no. I am well aware of that. However, the segregation from society makes collecting an income very difficult, if not impossible. I cannot go back to my old job. I know for a fact that I am not alone in that. So, am I trying to say that the money spent on a wheelchair is as much as a car? No. Percent wise, however, they are comparable, if the wheelchair is not more.

To try to overcome this ridiculous debt that could be gained by being in a wheelchair, I wrote a book. I want to be an author, and this book is my first attempt at being so. I really do ask that you at least consider it. E-Book copies are very inexpensive, and physical copies are available (if you like them as much as I do). Depending how this all goes, I have another book started, and it is looking like it will be a good one.

What I owe.

Yes, I owe nothing. It does not matter whether I live or die. It does not matter what condition I am in, either.

I started that off a bit harsh. What I meant by the whole living and dying part is that I deal with my own life. Yes, my demise would be sad for a few people, but they have to carry on. If I stopped posting on here/on FaceBook/on Twitter/on Tumblr, it might raise a couple of eyebrows and cause temporary sadness. I may have communicated with a number of people, but I do not impact lives on the grand scale. I am not the reason that you wake up in the morning, have coffee, or breakfast. Not doing those things would result in your death. Do not comment that I matter in your life, because you are either lying to me, or yourself.

The wheelchair is my burden. Sure: there are things I would love to do, but cannot due to this chair. Touring in a band being the big one. Me being in the chair does not stop you from doing what you want to do at your own pace. That doesn’t mean I do not appreciate when people are disappointed I cannot do something they want to do with me, but using my disability as a reason or crutch why you cannot and then making me feel bad about being unable to join you is the furthest thing from fair.
There is a very good chance you wanted to do ‘thing-X’ with me because you were convinced I would enjoy it. People need to remember that I cannot do it with them and that mean everyone. For example; if you are against sitting in accessible spots but would like to go to a movie, too fucking bad! They are there to help me out, and I fully understand they serve no purpose to you. Go sit somewhere else and ask me my opinion after the movie.
Unless we are on a date. In which case: let’s hold hands!

I realize this update sounds rather harsh, but getting angry with me for not being able to do things that you want to do is stupid. People use guilt and blame there inability to do something on me being in the chair. All it does is make me feel bad for something I did not ask for. That hardly seems fair, to me.