An apparent misstep.

I started writing this blog to keep people abreast with my physical situation. Then, I started writing to express myself. For the last year, I have been putting a greater weight on music reviews than I have either the former.

I want to be a resource for the community. The biggest issue where that is concerned: I don’t know what people need. If there was a more direct question, I am sure that I would be able to fill in the necissary steps to complete it. Even if the answer was getting help, I would know where to ask.

Consider this me tapping out of the review world for a little bit. Again, I will be doing them, but space them out more. Kind of like how I used to go about a month between spotlights.

In the meantime, if anyone can think of a particular situation in regards to disability they would like me to illuminate, PLEASE do not hesitate to ask. I think my first revisit to that world will be talking about how horrible air seat cushions are.

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.

Wheelchairs are Not a Death Sentence

I was talking to someone a while ago online so they could not see me. It was an old friend who I had not talked to in a number of years. We were talking about how last they heard anything about me, I was about to die. They explained that they were distressed by the news, and they wished they had been able to make it out to show their support to my family when the worst came to pass. They had not kept up with anyone, or looked on social media to see how I was doing. They then notified me that they were going to be in town and asked if they could come by to see me.

Not maliciously, I agreed and they made plans to come by. I was very excited: this was a friend I had not seen since high school. We were never that close, but the exchanges we had were pleasant when they happened. We had gone for coffee about a decade ago, run into each other at concerts, and we worked in close proximity. We never had many mutual friends, and our circles of connections were never close.

When they came to the door, I opened it. Imidiately, they broke down into tears and started murmering “I’m so sorry” between sobs.

I cannot say I was offended. I really did not pay much head until they gestured towards the wheelchair.

“I can’t believe this. You used to stand so proud.”

I was more taken back than offended. The implication that I was not at all the person I was before the wheelchair hurt. The judgement was made before they got to see what I had been doing: before they said more than ten words to me, and before I could even respond. The idea that the chair was a status instead of what it was: an aid.

Wheelchairs are NOT to be a reflection of who you are talking to. Yes, life is more dificult in some ways. Yes, I am in the chair because I cannot walk on my own. No, it is not dictating parts of my life.

To assume that my everything revolves around the chair is rather shallow. It shows a level of disregard for me the person, and a fixation on me the object. I cheated death twice, not being able to walk is only a minor repercussion.

Yes, being in a wheelchair does suck, in some ways. However, it is how I function and get around now. I will not say that it is preferred, but I refuse to bend to it being the worst outcome for any situation. I got out of my brain swelling with only minor brain damage that effected mostly superficial parts of me. I know it sounds bad, but I consider that a win.

No, I cannot work right now, and it sucks. So I write non-fiction to busy myself. To express creative endeavours, I write fiction. I am trying to get published because I know that, with proper support, I can do that. I am not even eluding to accessibility support, I am just terrible at marketing.

Tangent aside, if someone in your life finds themselves in a wheelchair, find out how they feel about it before jumping to condolences and depression. They might be in a good place, or even the best place they have been in for a while.

Why Blog?

Alternative name for this post was “Why Write?” but I feel like the answer to that is too broad but can still be answered very easily (I have to to get the demons out). For now, I will stick to this topic, because it’s easier to answer and less etherial.

As everyone is no doubt sick of hearing me harp on about, I got sick in 2013. Equally harped about is how I died at least twice, once made very public. I have mentioned how over 100 people showed up to say their goodbyes, to which I am overwhelmed and elated by the show of support for both me and my family. That event really is what got me started on this journey, though. I was both trying to figure out my standpoint on the whole event, and explaining it to everyone. It is nice having a place I can get someone to read a more structured version of the events as opposed to my trying to ramble my way through.

Now, for the less structured explanation. I have to write. I have to do something artistic. It’s like a knife driving into my brain. To relieve the pressure, I need to do something. So, I write. The book came together by accident, and I realize that I enjoyed going down that path.

Another thing it gives me is (at least an illusion of) a voice. I can say things in a public forum and have ways to get feedback. I have, in the past, only received feedback in semi-private areas like FaceBook or Twitter. I always apreciate comments and I hope that, one day, a conversation about the topic I just brought up can happen.

If what I write is not comedy that day, it is meant as a conversation starter. I try to bring up topics to create dialogue. Often, I see the topics as (at the very least) personal issues that people would appreciate discussing. I moderate every comment as to prevent ass-hattery. By that, I don’t mean if someone disagrees with whatever. Just comments like “LAWL YOUR SAD” or whatever because they can be unneeded.

For as much as I write about it, I don’t choose ventures that make money. First music, now writing. I am the worst bread-winner.

Regardless, I am enjoying writing the more blog situation. I get the freedom to express anything I want, and you people choose to read it! Good Lord, you’re all strange…

The Effects of Long-Term Hospital Stays

*THIS IS ALL FIRST HAND. I DON’T HAVE REFERENCES*

Now that I have the disclaimer out of the way, I am going to warn about long-term hospital stays and the effect on the mental wellbeing of the person in question.

Someone who is in hospital for any amount of time may be misdiagnosed as having depression or, in my case, brain damage. The patient can seem distant, gullible, despondent, or just all around wrong. The symptoms can include (but are not limited to) an unbalanced appetite, uncontrollable sadness, anger, sadness, and unwarranted outbursts.

To be blunt, this is not the fault of the individual OR the hospital. That person is used to life being one way, then (in some cases) literally have their independence ripped away from them. They might be used to keeping to themselves, then they have to socialize with specialists, nurses, and other patients. They might have their own regiment, now they have their day dictated to the minuet.

How does one treat them? With delicate understanding and a firm stance. You cannot bully them back to being “themselves”. You have to let them accept what’s going on around them in the hospital, and help them create new neural pathways to accept their surroundings.

Be careful when introducing new meds. Be sure everything in place is necessary. Do NOT be afraid to say that time is all they need. Last thing someone needs in time of emergency is to be on several anti-depressants when they don’t need it.

Please, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.guidelinesPlease, if you have additional insight or know of better guidlines in how to cope with institutional stays, leave them in the comments. I am sure other people need them, and I would love some additional reading.

Cripple Proud

I am a self-proclaimed cripple. There is a lot of discussion whether that is okay or not. I am going to give my 2-cents on that term, and you can feel free to challenge me to a foot race if you disagree with me.

To begin, I do understand the discomfort people have around the word. It is like any derogatory noun, but it just makes people feel dirty saying it as opposed to inciting violence.

The term should be used properly, and be (at the very least) mildly respected. By all definitions, I am a cripple. I cannot walk and I suffer from cranial damage. For me to call me a cripple, it is more in jest than self deprecation. If someone were to describe me as “crippled” I would take it the same as proclaiming that I wear glasses. In that case, it is no more offensive as someone using the colour of my shirt to pick me out of a crowd.

The more taboo phrasing is derogatory. To describe someone using that statement as part of an identifier is one thing. To define someone as a cripple is rather dangerous. Me, for instance, would find it mostly funny. If the topic was about going for a race and someone said something to the extent of “you have the cripple.” I would laugh, probably too hard. If someone came into a room and say “fuck, who let the cripple in?” joking, I would laugh. Really hard, depending on who it was. If someone bumped into me and said “fucking cripple” I would have to restrain myself not to hit something. The first two examples are saying cripple as either a mocking-identifyer or as a statement. The other is out of unnecessary frustration.

Now, I admit, the examples are poor. Anyone knocked by someone who then curses them out would be frustrated. I use that example more to illustrate using the term in passing as an insult. When you say the word to hurt someone, it is wrong, or “dirty.” If someone walks up to you and says “you woman” regardless of your sex, or gender, you would take it as an attack. That does not mean the word woman is bad in anyway.

Anyway, that is my take on calling someone a cripple. I am proud to be part of this community. The collection of differently abled people around are, for the most part, caring and loving. Of course, like every community, there are some bad eggs. My statement to them is that they should not be a bad egg.

Sidenote, if you want to make a pizza delivery person awkward, put ‘crippleparty’ in the comment section for an online delivery. Then, you have to have an obviously crippled party collect the pizza. The delivery person, if they read the comment, will be mortified and not say ANYTHING about it. It’s so good.

Chair Movement!

This is a post that I have wanted to write for a while.

I was recently chastised for having my hands in the wrong position when moving around. I would like to make it clear that it was by accident, but I do appreciate the note.

It seems like a strange thing. Why would it matter where you put your hands? Should it not be okay to have your hands anywhere as long as it is comfortable?

SURPRISE! It matters a lot. Or, it does if you want to keep your arms in use for a long time, anyway. Please, allow me to educate. I would like to add that this is all experience based, though I will be following up with people with a physio background to make sure that I don’t make egregious errors.

Imagine the wheel is the face of a clock. To propel yourself forward, your hands should be at 945-10. Why so far back? If you keep pushing from 11-1, you are not allowing the full motion of your arms to play out. You are forcing them to start part way through a natural motion and, therefore, will wear out your shoulder joint faster than if you start further back.

This is something that was mentioned to me early in my wheelchair experience, and I thought I was doing a fine job of it. However, I met with an occupational therapist the other day and she pointed out that I start my push too far forward.

Now, I was doing that in the apartment. It is hard to say that I do that when out and about, as it is easier to gain speed when pushing from further back. Having your hands closer to twelve makes it easier for small maneuvers and quick turns. This does not excuse where you have your hands. The possibility of muscle and join damage is present, anyway.

Advantages of having your hands at the right spot? As I mentioned before, speed. There is the vane advantage of improving pectoral muscles. This all does not ignore NOT NEEDING SHOULDER SURGERY!

Last happy update for a month! So, I will leave you with a warning. The next four updates are far from happy. I think the posts are important, but I realize the potential impact they can leave on a person. If you are one who has a hard time with dark ideas and depressing facts, I understand if you don’t check back in. Normal updates start back in June. If this warning has not scared you away, I hope you find the following four updates and funny as I do!

Please consider donating to my GoFundMe or Patreon.

Don’t Give Up

This is a response to my to the question of Giving Up. I have championed in a few interviews that I have done over the last few years that giving up is harder than not. I was recently asked to explain my perspective by the editor of a blog. I will keep my answer pragmatic and I will avoid bringing spiritual and etherial concepts into it.

I have, in some capacity, tried to kill myself two times in the past. My reasons were always in response to my life getting too hard, and not being able to see some sort of end to the “torture” that I was going through.

To be clear, the reasons I put torture in quotes is because, in retrospect, the trails and tribulations I was experiencing was juvenile and petty. At the time, however, I felt them too strong to ignore and I was having a hard time even leaving my room due to the fear of having to deal with them in any matter.

When I became bound to a wheelchair, I was forced to face my family and friends all trying very hard to keep me alive. They wanted, even needed, to see me succeed. They put all their resources into making sure that I could see tomorrow. This was not regardless of what I wanted, even if it felt like it some days.

After a short time, I noticed that me giving up would destroy them far worse than me continuing to breathe could ever destroy me. I had, by complete accident, become a reason for them to continue. It might not have been entirely true, and it might be selfish for me to think that way. I will concede that I made this leap of logic without consulting anyone around me.

The most shattering thing for my death wish was seeing the pages, literal pages, of goodwill that my friends had written on public forums. For all intents and purposes, I was not a great person. Everyone else was telling me otherwise.

What was my take-away? That if i died, I would be crushing everyone that has ever taken part in my life. Would anyone understand the issues that I face on a daly basis? No, and that is a good thing for them. This should not make me lonely. This should not make me seek isolation or death. I need to keep going to show everyone what can be done. I need to tell my story whenever I get the chance so that no one wonders. I need to explain how my nerves are shot, my brain is damaged, and my body is broken. I need them to see how fantastic everyone else has it and I need to make sure no one else goes through anything similar if it is avoidable.

Is that vain? Maybe. It helps me get through my day, though. It is what I need to keep going. Writing this blog and sharing my perspective is far more cathartic to me than maybe it actually helps anyone else. I write for me. I do research for this blog, and in the mean time I learn far more than what I write. Does that make me an expert? I actually had to force myself to finish that thought without interrupting it because I find the very concept hilarious. Is anyone an expert in fields like these?

Does my bleak outlook help? Maybe. Does art, writing, and music help? Again, maybe. It helps me. It reminds me who I was/am and helps me focus.

Do I actually believe my statement? Very much so. Am I chastising those who couldn’t do it? Very much no. I am saying that I get it. I know life can be overwhelming at times, and I know how bleak life can be. You do not need to suffer from a chronic illness or brain damage to feel hardship. Life is difficult. Anyone who say “can be difficult” is underselling just how crushing day to day can be.

Just remember that someone, somewhere, needs you to see tomorrow. You know that person you haven’t seen in a decade? Yeah, they need you. That guy who just wrote a page worth of bullshit on the internet telling you that it’s okay to feel sad? They need you, too.

Now, in response to those who became disabled later in life and feel like a burden. I get feeling like a burden to your family. You have no way of rectifying such an event, and you never asked to be put into the situation you find yourself in. I get it. I was just starting to gain my independence at 24, and I was stricken down by encephalitis enduced by, what they assume was, meningitis. I had to keep remembering that if my parents did not want to do what they did, they didn’t have to. I had to keep reminding myself that, though it would be caused of them, they did not have to keep doing what they were doing. If I was a true burden, I could have been placed into a home and ignored for the remainder of time. They didn’t, because it would be ridiculous if they did.

Friends and my wife I put into a similar category. I have lost friends. I have disappointed my wife. I have never hid my capabilities, I have also tried to make everything better. I probably exaggerate my disabilities in my mind towards some situations, but I don’t want to be a disappointment later.

I digress.

What I do have to remember is that they would leave if they found me an actual hinderance. My wife would divorce me if I was an actual burden to the household. I cannot work, so I write. I am always trying to cover my expenses for the household.

The point I am trying to make in this ramble is that, you might feel like a burden and that life would be easier without you, but that is wrong. Very wrong. People who you don’t really know might need you.

Oh, you didn’t know? You matter more than you realize.

I love you.

Update Time!!!

I usually write blog posts by Monday and have short stories lined up for at least a month. For the first time in a long time, I find myself with a totally empty cue. That is not because I am lazy, but because I find myself with too much in my mind to make a coherent post.

I have written and rewritten this post several times. I refuse to leave you hanging for another week while I sort out my personal life and try to find even a stand of something interesting. Therefore, I am writing this! Is that not super exciting? I know you are having a hard time containing your sounds of enthusiasm and glee.

Know what? I’m just going to put the developments that have come, in rapid succession, over the last week.

  1. I found a new way to step! To make it more exciting: I KNOW THAT IT IS THE RIGHT WAY! I have been walking with my knees locked for the last year. I knew it was wrong, but I could make it KIND OF work for the few steps that I needed to complete when using the washroom or going to bed. DID YOU KNOW THAT THERE IS A BEND IN YOUR KNEE WHEN YOU STAND?!?!?!? I did not. It seemed counter-intuitive to me. Why, when you are trying to stand, would you bend your knee? What is this magic?! Then, my wife mocked me for stepping like a pirate who has seen better days and explained the mechanics of the leg further than anyone has explained them in the past. Please keep in mind: she was a parapoligic for about a year and re=learned how to walk herself, so she is allowed to make fun of me. Well, let’s be frank, anyone can make fun of me so long as I know that it is in jest. I digress, I can now take a couple of more steps. Still no where near not needing the chair for open spaces, but things feel a little more comfortable AND I feel less silly. Oh, and my knees no longer feel like they are going to explode out of my flesh. So, I guess that’s a good thing.
  2. AMAZON REJECTED ME! By that, I mean the thing I was trying out. If I want to be paid by Amazon for advertising for them, I have to collect sales in my first “X” days. A fair number of them. In a reality that surprises NO ONE: I didn’t even get clicks for the links that I had made available to the public. I do understand Amazon’s wish the govern this, seeing as they already have thousands of people advertising for them. This increases the importance of devices like Patreon to make sure that I can keep doing this. I love writing, and I am always trying to find new avenues to do it. So far, the short stories are going well, and people seem to enjoy them. At least, they do to my “face.” WHAT A GREAT SEGUE INTO POINT THREE! segue is a stupid word.
  3. Story three is taking a lot longer than I wanted it to. I wanted to write something completely original. Like I mentioned in a recent post, I want to dissect and rewrite an old story idea I had originally come up with over ten years ago. In trying to do that, I have come up with literally HUNDREDS of premisses and intro paragraphs. All of which I get so far, then they fall apart. I have written most of them down in a document so I have them in case I need them later, but I am feeling the heat as I want to have the Patreon supporters their copy in just over a week from today.

So, yeah. See how not one of these points are longer than a few lines? Each would make a good blog entry if I could expand it further than just a few lines. I prefir to keep things at more than just a thought or two, though I do realize how just one thought would make things easier to follow.

DAMN MY MIND. BACK TO THE GRIND.

heh… that rhymed.
And so did that…

I guess I should talk about…

…that thing I did over a week ago. I write these a little bit more than a week ahead usually, so news is delayed.

I should just not time stamp all together.

ANYWAY! Tash and I went to Canada’s Wonderland on August 15th! It was hot, it was a long day, and much was discovered. Mostly, eight hours in the sun without sunscreen is a bad idea: who knew?!

Once we got in the gate (which was a bit longer than anticipated thanks to Tash’s work) we got a map and a coffee and started to sort out the plan for the day. We sat under a tree and our faces dropped when we realized that I needed a special pass that I was unaware of at the time. We knew that there would be some awkward bullshit around me being in a chair and whatnot, but we had to come to that discovery on our own. By this point, we had talked to five or six staff who did not even let on that we needed to go to customer service for a piece of paper.

We did what we needed to. The customer service desk was also the hub for missing children as well as general complaints, so we were number three in line, give or take.

FORTY FIVE FUCKING MINUETS LATER and we finally got in the building for the five minuet thing. I hate people.

Anyway, the first hour passed, and we were on our way. Where? Dragon Fire, of course. We figured that it would be a good introduction for the process around everything to do with the chair.

…and the verdict..?

It was all good. A bit strange: wheelchair users were taken up through the exit so their chair was on the proper side to leave the ride at the end. We got to avoid waiting the queue, but that does not mean that we got to skip the line all together. They would base our load time on the estimated wait time for the line. We might be one circuit faster, but we still waited. At times, we would be behind the gate for thirty minuets. It was entertaining usually to see all the workings of the employees as they scrambled to make sure everything and everyone was safe.

There was only one time that was awkward. The ride we were waiting for broke literally the time before we were to be let on. I mean, shit happens, but it was a bit disheartening.

The bitch of the trip was how uneven the paths were. I pulled the muscle in my shoulder trying to keep myself moving in the desired direction, and Tash almost had to bail on a couple of rides from being exhausted pushing my chair up the ramps.

FIRST WORLD PROBLEMS!

The main point that I wanted to say is that, minus sun burns and sore muscles, being in a wheelchair was not a deterrent for going to Wonderland. If you go, just expect a fuck tonne of work getting from point A to B.

INTERESTING REMINDER!

Almighty Human by Hannah Jordan gets released soon. I hope you like it as much as I do!

I am taking submissions for the following months. Please, e-mail me at jay.garden.1188(at)gmail.com for more into!

…and again: I have to thank my Patreon supporters for making it financially viable to release these every month! Next goal is to make sure I can pay someone to do art for each release, since I cannot do visual art in any capacity.