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.

Book

Advertisements

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.

I was so angry…

Hello and welcome to the Monthly Update! I’m sorry that I am not doing weekly any longer; I was a bit burnt out. HOPEFULLY this new update schedule will allow me to be a bit more thorough and will grant me the time to make sure updates remain interesting and methodical.

I was outside the other night, hanging out and laughing with some friends, when I was confronted with the most outrageous question.

“So, can you walk?”

It seems innocent enough in writing, but the inflection was that of assumption. The person who asked the question genuinely expected me to get up at that point in celebration of my legs and demonstrate how I am just using this mode of transportation because… uh… Maybe she thought it was a fashion statement?

Regardless of what she thought the end-game was, she was actually surprised that I took offence to the statement.

I raised my voice and shouted “fuck you, I can’t” and she got mildly confused. I tried to explain, with great conviction, that people are in chairs for reason. No one thinks “I’m going to hang out in a wheelchair this month!” Not many abled people, anyway.

The fact of the matter is that, yes, there are people who can walk that just need the assistance every once in a while.

There are people who are stricken down, rather randomly, by incredible joint or bone fatigue. They may go DAYS without a wheelchair, but eventually, their body will just “nope” that day and they cannot walk. There are people who have amputations and have a prosthetic limb that needs servicing one day, and they are in a chair for a while as it gets fixed/resized.

After I went on my rant and the girl left rather shaken up, my friend piped up exclaiming that she would not even ask why people are in a chair.

Initial shock had worn off, so (RATIONALLY) I explained that most people do not mind being asked (please let me know if I am wrong). Please remember you are talking to a person. They have feelings. They can read situations fairly well, at least some can.

The one warning I can offer: do not be offended if they do not want to talk about it. Do not be disappointed if they give a half answer and change topic. Either they will explain if/when they feel more comfortable with you. Or they will never explain. Maybe you asked at the wrong time. Maybe even they do not understand the whole story. Maybe they just DON’T WANT TO TELL YOU.

IN THE EVENT IT IS CLEAR THAT YOU OFFENDED THEM:
Just explain, as calmly as you can, that you are sorry. Tell them why you asked: most people in chairs are used to being marginalized.

People in wheelchairs are faced with scrutiny and inequality everyday. This idea does not even include those who already have very unhealthy feelings about being in a wheelchair. I cannot speak for everyone else, but I know I have had a very hard time feeling worthy of the title of “human being” because literally most of my body is chair. There seems to be a stigma that people bound to a wheelchair are “sick” and I know that I have been trying to get over that idea for the better part of two years.

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.

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

Giving up.

I had a discussion with a gentleman about the idea of “giving up” tonight. I got thinking about myself and what I have gone through both physically and mentally over the last couple of years and I have come to a conclusion which should be no surprise to anyone.

Why give up?

The very idea implies that you feel as though you cannot make it through what you are in and life is just too overbearing to get through.
The very idea implies that you feel you cannot achieve a goal you have set for yourself.

Please correct me if my definition is wrong.

I hope no one is actually fearing for me in regards to giving up. As I said to my friend: I am way too arrogant to give up.

Like I have stated before: I am medically sound. I have yet to be told that I am in this position permanently with any sort of assurance other than “I’m a doctor and know everything. What’s your name again?”

I was expected to die. Lived.
I was not supposed to digest or eat on my own. Do.
I was not supposed to breathe on my own. Do.
I am supposed to suffer major cognitive issues and am never supposed to be able to generate thoughts for myself. I have kept this blog open between two different sites for almost a year at this point.
I was never supposed to be able to even stand with a walker. I can walk close to a Kilometer with one.

Am I going to just roll over and accept what I have?

No. It could be viewed as the easier option, but I would just be so disappointed in myself. I have come this far. I have done so much. I am in school and got a fucking scholarship to be here.

I have been reminded of some things people have posted over the last two weeks. It is always humbling to know that I have touched people and I hope to continue to be important in the lives of who I am close to.

This is far from the update I was planning on doing. I am having difficulty getting recourses together, so I may take the rest of the year to make sure I get everything I need together.

Have a great Holiday, a fantastic New Year, and a great last few weeks of this month.

Bits and Snippets

I was talking it over with a friend of mine how I really do not have any topics right now that would allow me to write for lines and lines. All I have are a bunch of ideas; notes and notions that would not take up a full update. Almost like a status update or FAQ. So, for this update, I will just spitfire some things that should be noted.

  1. Wheelchairs do not rust. They are made from aluminum and rubber, and do not just stop working in poor weather.
  2. I wear gloves, as I have discussed before, because I touch the ground with every foot I travel. Yes, there are bars that prevent me from touching the wheels, but they are smooth and cold. Fuck that.
  3. A PSW is a helper. They do things that I cannot do myself.
  4. Wheelchair doors are for everyone and you should not feel shame if you need them. A bunch of people in wheelchairs will not ridicule you for using them, unless you are being a dick bag.
  5. Wheelchair users take up approximately less than one percent of the world population.

That is all I have this week. Comments? Questions? Points? Leave a hello below or shoot me an e-mail @ jygrdn{at}gmail.com.

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.

Why do I wear gloves?

I have been asked a few times why I wear gloves. People see them and the wheelchair and assume that I have something wrong with my hands, as well.

The main reason is traction. The push-bars on the wheels have little grip and the gloves I wear have a rubber palm, thus making life less hazardous. There is nothing more intimidating than going down a small hill and loosing control.

Another reason is protection. Since I started school, I have gone through three pairs of gloves. The thumb wears out, first. Then the first finger. I then poke my fingers through for accessing things, like my cellphone. It definitely does not help the condition of the gloves, but I take a sick satisfaction in doing so.

The third reason is common sense. I have to push the wheels along the ground. I have to touch the ground. It would be the same as an able-body person touching the bottom of their shoe every step they took.

That is also why I hate weather now

I do take the gloves off, at times. Human touch, laziness, a moment of forgetting. All times when you can see my glorious hands!

I found writing this post rather boring and dry. It is rather un-fun, the life I lead. Ask me questions in the comments below so I have a greater understanding of what people wonder! I will always answer, either in private or on this blog!