Tag: meningoencephalitis

~Rather interesting date.

I have been told repeatedly by my parents that this day five years ago was when I first regained consciousness after my coma. Life support was pulled on the 12th. I just thought I would share that bit of information.

To anyone keeping track, this marks five years and eight days since I last died.

I started to write this post hoping that I would come up with some humours take on the whole thing. I guess I am sorry that you are stuck with me a bit longer?

So, my ending will simply be enjoyment of my fourth cup of coffee, cuddling with one of my six animals, and continued pensive waiting for my wife to come home from work. All the while, I will continue muscle training and walking practice.

***

I did a phone interview for Tell the Bartender PodCast. The release for the PodCast is soon, but I will post a reminder for that when it comes to the date in a week.

~Re-Branding Idea

Someone brought up the fact that viralmeningoecephalitis.com is very complicated and very impossible for people to say, let alone spell. So, I have an additional way to find the site! http://www.wheelchairhero.com will redirect you right to this website, per usual. Easier to say. Easier to spell. All in all: it’s a win/win!

Bad Cripple Day

What is a bad cripple day? It is a day where nothing works because of my condition. It’s a day where I have a hard time moving across the room, or boiling coffee, or making dinner. It’s always silly and stupid things, but never just one thing.

What I am finding awkward is how many people do not like that I use that phrase to describe my day. Yes: I know it’s offensively put, but it brings me joy in how blunt it truly is. I gain great entertainment from saying those three words.

Is there such thing as a good cripple day? No. On that note: I would not need an inappropriate phrase to raise my spirits if I am in the middle of a good day.

Please, buy my book.

How To Talk To People

I am not going to teach you the ways of being social. That is something I have and will always be awkward and terrible at. I am going to complain about how people talk to people in wheelchairs, though.

There is nothing more frustrating than someone assuming they have to condescend to someone who is in a chair. There seems to be a strange assumption that people in a wheelchair are “slow” or are suffering with some sort of deficiency mentally. Yes: I am aware that you are just trying to be helpful. but it is offensive. There is a large percent of people in chairs who are actually incredibly articulate and we (of course, I can only really speak for myself) feel horrible when you do this.

Instead of assuming we are less than you (yes; when you speak that way, you are demonstrating a form of superiority), talk to someone in a wheelchair as an equal. Talk to someone as you would with anyone.

I hate that I have to write this, but the idea that people in wheelchairs are lesser humans seems to permeate the societal norms. Speak normally. Speak fluently.

It is VERY obvious when someone is doing this. Especially when we respond in a calculated fashion and the surprise on the perpetrator’s face cuts through an expression. There always seems to be a moment, an agonizingly long moment, of realization that they are following. There is genuine surprise when people can grasp situations. If you do this, you just end up looking foolish to the person you are talking down to. It may sound like this situation should be funny to the person in the chair, but it is not.

You are talking to the person in that way because you think you need to. We know this, and it is not a good feeling.

Again: I cannot talk for everyone in a chair. I know that when I am faced with the situation, I wonder if I do come off as slow. I immediately would have to talk to someone around me to make sure I can keep up with the conversation. I immediately start into religion, or international politics just to make sure I make sense.

PERSONAL EXAMPLE TIME:

I was tasked with this topic by Kelsey. She has always treated me as an equal and has exclaimed many times how she forgets I am even in the chair sometimes. She was actually caught off guard when she witnessed a person talking down to me while asking for directions to somewhere.

I was far from offended: it seemed like the person was just a patronizing neanderthal to everyone they comes across. It did not change the fact that Kelsey was completely flustered.

My reaction was, of course, “yeah. People are fun.” I really didn’t think anything irrational about the situation, for it was one I have dealt with before.

When it was clear Kelsey didn’t get my calm reaction to the situation, I started thinking. That was about the time I realized that there were a great number of people who were talking down to others while trying to be “caring” and “understanding.”

I get it. Oh good lord, do I get it.

I am in a very excellent position that I have people around me who do not talk down to me. It is strange, but they even view me as an equal.

So, it’s been about one year on WP…

I have had this URL in particular since April fourth, 2015. So far, I have had just shy of 3000 people view it and posted 70 times (this update is post 71). I want to formally thank everyone who has come out and supported this project, as well as give a boring update as well as an exciting update!

(I am well aware that I posted something back in February, but this is the one year of this website. One I feel very confident about, even if the information is, at times, very fluffy)

So, the boring update first:
Since I have started writing on here, I have received a great outpour of interest and love from the community that has built. I started writing this for myself, but continue to update because of the questions I have been asked regarding the wheelchair community as a whole. I hope that everyone has found this as interesting as those people that have come up to me voicing interest and such.
I have an apartment I will be moving into (crossing fingers) as of the first of July. Unfortunately, the move is necessary: I have been kicked out of school for doing poorly. It is something I find rather ironic, but it is indeed a fact that I have to deal with. Never fear (if you had fear for some reason), I will be fine. Always have been and always will be.

Now, for the bits I find exciting!
I took an unassisted step the other week! I keep pushing everyday, and I am proud to announce that I take at least one everyday! I am NOWHERE near walking for kilometres, or even ready to leave the wheelchair, but I thought I should talk about that!
ALSO: I got the go ahead from my publisher regarding my book! I am finally done the editing phase, and I will be going ahead with a digital distribution. I want to do a physical one, but I cannot afford it in the slightest. ESPECIALLY with the aforementioned apartment in the near future. I have plans, however, to do a physical release with some added information and chapters if I see there is interest in it. I just cannot go all in for a “maybe” at this point in time.

So, yeah! That’s my update. I hope you are all doing well. Again; thank you for one excellent and interesting year! Here’s to as many as I can do and as many as you would like to read.

Random Update About Things

I thought I would write about what is going on both health and life wise.

My muscles are coming back! The other day, I took roughly five steps in total! I repeat the process everyday. Sometimes, it is easier! Other times, I barely perform one. It has only been a week so far, but I have noticed some great progress already!

I have great weakness in my thighs due to atrophied. I am unable to stand without something in front of me. I have been working on that, however. I am proud to say that I can now stand with little help from my hands outside of guidance!

Now, if I could only do both at the same time…
Soon, I hope. Very soon if I keep on this path I am on!

I have also signed up for a wheelchair specified program at McMaster University called Mac  Wheelers. I have an assessment on the sixth and I am very excited. Very few people know, but I have actually been rejected from further physio-therapy. I have suspicions as to the real reason, but I have been told that I spent far too long in hospital and I need to look into private things to further myself.

NOW FOR PERSONAL STUFF!
I have started the process for an apartment. Natasha and I have decided to move in together, and we are 90% of the way through the paper work! A couple of things have come up to hinder our progress, but we are doing what we can to make sure everything moves smoothly!

As some of you know, I keep an independent music review blog over on Mind The Music T.O. and have for the last year almost every Monday. I recently came up with the idea of doing video instead of text reviews. Ideas? Comments? Recommendations? Please, hand something over. I really like the idea of doing a medium I have not experimented with, but I am terrified for the outcome.

BOOK NEWS

Book is with the editor now. I have written one revision, but the process is slow. PLEASE BE PATIENT WITH ME

Patreon.

An Apology

Hello:

I feel like that last post was, in many ways, a failure. I have read it over since its posting, and I hate it. It was scattered and flakey. There was no purpose, even though it started hinting at one time and time again.

I think that the book really did take a lot out of me. It is not very long: roughly eighty pages. It was still, however, deep enough for me to get lost in it.

That is not really an excuse, just an explanation as to why that last bit was lack-lustre. I am embarrassed, and it will never happen again.

In the future, I will just simply post that I need some time to re-coup, and take down notes if I have an idea. That way, I will not mar your day with nonsense.

IMPORTANT NOTES FROM LAST WEEK:

  • I looked at an appartment with Natasha. We like it. If all goes well, it is ours at the end of the month.
  • I finished my book and sent it off for editing. I will post more news when I have more news.

Patreon. I do not deserve the recognition right now, but I will put this here in case.

Eyes

I would be lying if I denied thinking of writing “I HAVE EYES” and calling it a day.

I have had “amazing” eyes since my birth. I have been to many optometrists and ophthalmologists over the years: all of them claim my eyes were great. I got my drivers license and have never worn glasses a day in my life.

SURPRISE! I NEED THEM NOW!

Hilariously, doctors and opticians are quick to blame the encephalitis disrupting my optic nerve. I have been complaining about having issues seeing all my life and have always been ignored and labeled as “someone who cries wolf.”

I have a nestigma. It is where my eyes do not collect light on the same angle, and are always trying to focus with the other. This leads me to having “elevator eyes” or eyes that will not look forward. Couple that with a bit of an estigma, and my eyes are a recipie for disaster behind the wheel.

Am I near or far sighted?
No.

I guess if I had to choose a distance, it would be close up that I see better. To be fair, I cannot see a damned thing at any distance.

I find it hilarious that I drove for seven years and went across province with eyes that are sub-par. I have had hundreds of lives in my hands, and I was physically unfit to have that kind of responsibility.

Now, my perscription is light, kind of. My left eye has only the lens of reading glasses. My right eye, a fact that fucked with everyone, is the one with the most issue. The lens still does not have a large persciption, but it is beveled. This is to refract the light and it is supposed to assist in focus, which it does.

Sick confession: I have always wanted a pair of glasses. I hated sunglasses, however. I have always wanted the simple, almost invisible, and quite fashionable frames. I think it is from growing up and my mother needing a pair always.

My point is: glasses are cool. And by cool, I mean I need and like them.

Patreon

My Distractions

I sit in my room, in relative isolation. I am not in classes right now, and most people would be crushed by the boredom.

What do I do to pass the time? GREAT QUESTION

I write. A lot. Either on Mind the Music T.O. or my Tumblr. MTMTO is weekly and is where I get to listen to great independent bands; to voice my opinion. Do I expect to sway opinions? Hell no. I really just want to help people find bands not available through traditional means.

My Tumblr is a graveyard of started ideas and things that I think are great. The only reason to read it is if you want to follow someone else on another social media.

This really is the focus of my time. I use this blog to hone my HTML skills and voice what I think is interesting for people to know.

Off topic: if I truly was afflicted with Viral Meningoencephalitis, I am one of the few people who have ever survived it. Well, in the human race, anyway.

My issue that I have been faced with recently is that I was vaccinated against Meningitis back in my early teens. There is always the assumption that one might loose immunity over time, but I was never told that. I had to figure that out for myself over the last little bit.

Then again, this is assuming I did get Meningitis.

The attention to what got me sick, at this point, is totally without merit. It would be nice to know, I guess. It will not change anything, however. It would just open another can of worms trying to avoid contracting whatever sickness it was again.

Even more fun is thinking that it was a common ailment that went awry. That means ANYONE could get it, and that actually makes me chuckle a bit.

ON A SIDE-SIDE NOTE: It was my birthday back on the twelfth. My friend Steve got me Death From Above 1979’s seminal album “You’re a Woman, I’m a Machine” and I have not stopped spinning it since. So. Fucking. Awesome.

An E-Mail From A Friend

This an e-mail from my friend Kyle Becker.

I cut off the intro paragraph because it was full of personal shit relating to his and my friendship. To paraphrase, we met through a mutual friend of mine and mainly always talked through a middleman. That is not to diminish how much he meant to me. He is a brother, and always will be. Kyle: come over. Let’s chill. Fuck knows that I would love to catch up in person instead of twice-a-month piecemeal like I currently am.

I digress. Without further ado, here is Kyle’s story.

————————–

When I checked my Facebook in October 2013 I was devastated by the thought of losing you on this earth. There was so much controversy on the social media from people who had no place discussing your business.

Obviously I immediately contacted Pat . They were planning to visit you, just the old band guys, but Pat insisted that I should come with if I wished, and I felt it was right.

When we got to the waiting room, it was like an old reunion. So many people that had once been friends, but grown apart, had all put aside their differences in the honour of your name. We waited for a while and tried to stay positive in means of moral support for the other people. It was hard to stay quiet as we listened to everyone’s opinion on how things were going. I can’t recall how much time went by but when they said it was our time to go in, my heart stopped.

The thoughts racing through my head. “Going to see Jay, for what could possibly be the last time. Regardless of what the clinic was saying: I refused to believe any of it.”

I’m not trying to sit here and say I knew anything, other than the fact that you were stronger than the typical person they were used to. Even though you were in a comatose state, I honestly felt your presence as if you were awake. As scary as it is, I would love to know what was going on in your mind at that time.

We were told this may very well be goodbye, as I was standing at your side, I held your hand, but refused to say farewell. I told you “this is not the end, we will see you again.”

After more heavy tears we slowly made our way back to town. I was in shock. Seeing you there like that. It almost killed me, you have always been an inspiration to me, and you have not failed to live up to that expectation. I’ve watched all your posts and to see your progress, I can’t say I’ve ever been more proud. I am not trying to take any credit, you are doing this on your own. I guess what I’m trying to say is: Regardless what these medical professionals try to say, they cannot judge character with DNA and testing. The spirit you embrace has carried many people through hard times, and i am every bit confident that you will carry yourself through this as well.

What you are doing everyday and continue to do is a game changer to anyone who has been told defeating facts from their doctor. It brings tears to my eyes to watch you break through with amazing progress. Although the battle is not over, I truly hope you acknowledge the distance you have already travelled. Not in means to slow you down, but in hope to encourage you to finding the battle on your terms. You have traits that I hope to one day acquire.

Your a good man. And a good friend.

I hope one day I can do for you what you have done for me. I’m here if ever you need me.