Yep. I did another one. Let me know what you think.
Okay, this sounds like a no-brainer to me, but maybe I’m biased.
If I you don’t see something, it does not mean that it did not happen. We cannot see electricity powering a device, we cannot see water moving through pipes, and we do not see our body metabolising energy. All of these things happen in the background and we do not question their existence.
With all of these things in mind: if someone says they did their recommended exercise for the day, BELIEVE THEM.
I have been, for months, dealing with people in my life not believing me when I say that I did ‘x’. I am just going to put ‘x’ because there are many different things that have been brought to question.
No, there is not always physical proof that ‘x’ happened, but it did. My promise should be enough. Especially when it involves a thing that only benefits me.
I get it: people have an interest in me walking again. People have this idealised fantasy where everything is the same as it was seven years ago. Well; news flash! Even if I walked TOMORROW I might never be able to get my license back. Even if I walked TOMORROW I could be turned away from my old job. In that situation, I would come out much further behind than where I am now.
Now, let’s play positive-guy for this paragraph. Assuming that I did my exercises proper and everything went the way half the medical community says that it should, I am still six weeks off ON THE SHORT END of being able to kind of walk. Assuming my medication continues to work as predicted and my body does not create some sort of immunity, I could avoid seizures wrecking my day, but they are to be a constant in my life.
I didn’t write this as a pity-party for myself. I wrote this on behalf of everyone who feels pressured to do something they are doing already and having no one believe them. I am writing this for everyone that feels overburdened by people who have this strange vested interest in their health, even if it really doesn’t affect them. I am writing this for every person who has been told there is a 5% chance of recovery.
DO IT FOR YOU. NOT FOR THEM.
And for “them”: fuck off. We are doing our best, even if you don’t believe us.
I hate posting “in memorial”s on this page. I always feel like it is just me saying “PITY ME, I’M SAD!” which could not be further from the truth. I feel like this is important because of how important Krista was, to me personally, as well as a fantastic person.
I met Krista in 2008. She worked at a local video game store that my store dealt quite a lot with due to our similar stock and interest. She seemed to be a quiet girl, very knowledgeable and well versed in the world of electronic media. At the time I really did not get to know her well, and I always regretted that.
Fast forward to mid 2019. As far as I knew, I was the only person alive who contracted Viral Meningoencephalitis. I say that with absolutely no pride, as I felt alone and absolutely isolated from everyone I have ever and could ever meet. I wanted to share with someone what experiences I had, and wanted to learn from someone what to expect. As far as my limited research goes, there was no one for me to reach out to.
Shortly after my first book, You’re Not Dead, was released, my friend Michelle reached out. She wanted to get a copy to read to her friend that, as far as I knew, went through a similar ordeal. Fast forward a year, and I finally was put back in touch with Krista. It tuns out that she went through a similar thing because we had similar diagnostics. We had both confounded the medical communities with symptoms that made no sense.
For the next year, we would talk over messengers about what we went through. She, daily, reminded me that what we went through was not a competition. At the time, I was completely confused what she could mean by that. It took me several weeks to realize that, inadvertently, I was trying to compare by competing. By that, I mean that I would say “I suffered more because I went through this” while trying to see if she did something similar.
I am not proud of many things, but I am extremely proud that I had ever met Krista. I will miss her.
The following is a post that I’m writing while I’m depressed. There is no reason to worry, I just thought I’d get my emotions out unedited and maybe this will explain why I am the way I am. Not for you, dear reader. I hope that it will allow for introspection, and allow me to figure out my brain a bit better.
I have, ever since I saw Amanda Palmer, championed the idea that writing while actually depressed is very difficult. I know that, for me, I become hyper critical.
I mean, I looked at the title for this post for about 25 minuets to decide if it was too flashy for this experiment, or not flashy enough. After all: I am trying to garnish an audience. At the same time, I am trying to avoid clickbait and concern.
The pride that I take in the image I portray is pathetic. Even to me. I want to be seen as strong; as a kind of guide for the people that have been struck down later in life by a disability. I don’t have any credentials, but I think I’m doing an okay job figuring shit out.
I digress. What kind of depressed am I today? Just a melancholy level of morose and leads me to come off as caring more than I should. That sounds almost malicious: I should say that I come off as overly empathetic. The feelings are real, but the delivery seems almost fake. I think, anyway. I could be wrong. I just feel like I am costing through the miasma of life, and I will do almost anything that seems like a good idea to someone.
This is the mood I was in when I started smoking. I had a friend who smoked, thought I came off as disturbed, and tossed me a cigarette to help me calm down. I really would never blame my smoking on someone else, but I want to be truthful in this.
So, yeah. This has been a deconstruction of what my depressed brain thinks. If I post this, it will be unedited from this point on. I have done very little in the mean time, and I think I have done okay. I am saying that without reading everything over, so if I’m wrong, all the better.
One thing I do want to say; I am writing about what goes on in my own head. None of this is a representation of depression in everyone. If you are depressed, or know someone who is depressed, contact someone who is trained on how to help.
Anyway, I feel I have rambled on enough. Something I am finding very hard to do is to leave this “article” alone as a kind of stamp and evolution of my mood. I am sorry if it gets a bit rambly at times. I am sorry if this ending is anti-climatic. I feel silly closing off what I wrote with a paragraph like this. I just need to tell everyone, especially you, that it will all be okay. It may not seem like it, but we’ll all survive this hell. Maybe we won’t be able to do it alone, but there is always someone out there. Even when it’s hard as hell to find someone, they are out there. At the very least, you have me.
Something that has been literally holding my life back is people making empty promises. I couldn’t tell you how often I am told that someone will do something, then either don’t come through, or pretend that the conversation never happened.
Now, it is something entirely different if you say “I’m going to visit every so often” then fail to do so. That falls under the category of wishful thinking. Therefore, you’re a dick, but you haven’t ruined lives or bailed on anything greater than a nice gesture.
The kind of promises that I am talking about is saying something along the lines of offering to pay for a service, only to renege that offer past the point of no return. Especially when the decision was made only because you make yourself available on fallback.
Example: when I published my first book, I did so independently. That is to say that I paid for printing, editing, and distribution. Now, I did this with no expectation to be paid by anyone for doing any of it, but I was promised by a third party that they would reimburse me for what I have put out. I made sure, triple checked, then went ahead with aditional things that made the publication easier. Thing that I would not have bothered with if I wasn’t promised that they would cover the whole cost.
I am well aware that it was expensive: it cost me around three-thousand upfront. My issue lies with the idea that I dropped another two-thousand on advertising and localization that I would not have if I didn’t think that the initial was going to be covered.
Now, is that my fault? I cannot say that it’s not. I didn’t wait for the money to appear before I spent more. If I was smarter, I would have waited for the exchange before I went ahead and dropped more onto that failing venture.
Please, keep in mind: I say failing because I made back about a fifth of what I put into the project. I do NOT regret the book, though I do feel like the rewrite that I have half completed is MUCH better. More news on that in the coming weeks.
That is one, very shallow, example of what I am talking about. I could go into issues surrounding school, medical stuff, rent, dogs, food, and all of this would ignore the times that I have been in a good financial standing and had my questions disregarded to generate a much worse situation. I am not going to bring up spacifics. There is too high of risk of the people involved reading this and realizing that I am talking about them, and I don’t want to deal with any of it right now.
I guess this devolved into a rant about money. Again. It seems to be a reocuring topic on this blog, and I am very sorry about that. I very much wish that I could ignore money and just focus on other things, like writing and walking.
Side-note: does anyone else find it mildly offensive that society puts so much emphasis on walking? I realize that this comes off as me justifying me not walking, but that just strengthens my point. The fact that I don’t walk shouldn’t make me seem like a burden or someone you need to caudle. In fact, what I have survived (both medically and in life) should inspre the opposite reaction from people. I AM OKAY. I WILL SURVIVE.
Another aside, please consider giving to my Patreon. I am okay, physically and mentally. I cannot afford to feed my dogs some weeks, though. I might be okay physically or whatever, but that doesn’t mean that I can hold a traditional job. Plus, everyone is so close to hitting the $100 mark! I want to do something amazing for that number. I want to post something fascinating, or do a video, or bake dinner for people, or SOMETHING. If you have ideas, place them in the comments below. Please, consider helping me hit that mark. Even just a dollar is fucking fantastic. PLUS and the ansP subscription is only $1 right now! That means you get releases early!
Today, I did something I should never have done. Today, I looked up the keyword ‘wheelchair’ on Twitter.
Sound innocuous, right? Should just be the occasional stupid thing followed by a bunch of like-minded people discussing wheelchairs, right?
The first page was entirely animals in homemade chairs. Pretty cool designs. Really nifty for the “I love animals” crowd. Then, it was almost a page of tech surrounding wheelchairs. Prototypes, interesting chair designs, cars adapted for wheelchairs… that kind of thing.
I would argue for these kinds of posts existing. They are general knowledge, to an extent. That is not to argue how adorable that puppy is running for, in some cases, the first time in its life.
There was the standard frilly “you can do it” bullshit that seems to be everywhere when dealing with wheelchairs. I get the message, but the words do not fix anything. Plus, it places an unfair standard on those who will never be able to be what you think they should get over. These lines say nothing for those born with physical or mental disabilities…
Again, nice try. The intention is there, and though I personally get frustrated by such public displays, they do not harm anyone. I have never heard someone in a wheelchair get actually offended by these sentiments. Like always, feel free to prove me wrong in comments or whatever.
Then, there was a collection of updates that I was not mentally prepared for, and it corrupted everything I saw prior.
Update after update of companies announcing that they are finally wheelchair accessible. It was all like they wanted a pat on the back or some sort of award for recognizing people as people. It was incredibly hollow and self-serving. People in wheelchairs are, well, people. If you have to MAKE your location wheelchair accessible, you have to MAKE your store/company/whatever usable to a percent of the general public.
Yes, I realize that there in a silly small percent of people in wheelchairs. I will, however, point out that there is a large percent of people with mobility aids. Announcing that your building finally has accessible parking should not effect your bottom line, not having accessible parking should be hurting your bottom line. Finally catching up with the rest of society does not make for a good image. As stupid as it sounds, it’s the wheelchair COMMUNITY. If your place of business is not acceptably accessible, we do talk to one another. We will pass that information to friends, family, and neighbours. We don’t like being patronized, and we REALLY don’t like being singled out because of the wheelchair.
I might be putting my opinion as fact, I am well aware of that. This does not, however, mean that my opinion is only share by me. How many people remain silent because they do not have a soap-box to stand on, or legs to do so?
*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.
I cannot talk about what’s been going on for the last couple of weeks. All I can say is that I am in incredible pain, but in a good way. That sounds mad, I am well aware, but I’m thoroughly enjoying… X… Let’s call it “X”
I have been writing a journal in relation to X. The way X was pitched to me makes it sound fantastic and I am very excited to see what happens in two months. two weeks. two hours. Fuck me, I am in a lot of pain.
Anyway, I am trying so hard to keep this vague and I cannot help but feel I am failing. I am going to stop rambling in relation to X so I do not ruin.
I hit on this topic a month ago or so, but it came to light recently by a friend. He pointed out that I need a “Positive attitude.” I agreed, and acknowledged that I can be a bit morose, but I use my bleak outlook as comic alleviation. They immediately started pointing out how that is wrong. I am not denying that having a positive outlook is admirable, but being ostracized for being dark is extreme.
To look at the darker things in life can be shallow, but what does that say about life? If it is easier to point out and wallow in everything bleak and horrible, we have to look at our current climate and question the direction of society as a whole.
Where I deviate is that I point out the dark to accentuate the positive. I will help 10 old women across the road, then explain how patronizing and ridiculous it is that doing so makes me a good person. I am not doing it to minimize my actions, or to ridicule those who do not take them. I am simply examining what is going on and finding some sort of silver lining.
This world is scary. Life is horrible. We are all going to die. Now spin that! The world is scary, but it is scary because we do not look at what is possible. Did you know that your liver can reconstruct itself when just a quarter of its original size? That is fucking cool!
Life hurts. Heart ache, death, abandonment… So many things to fear and hate. It can also bring so much joy it can be overwhelming. Just look into the disabled community for stories that very much define how life can be amazing. Look at child birth to literally see a life that didn’t exist, exist! What the holy aweifoweifawefasfaweio — that’s so cool!
Yes, we are all going to die. That is a fact of, well, life. So, if that is such a fact, why ignore any part of what’s around you? Amazing things are only amazing in contrast to the less-than amazing. The time you don’t think that you made it across the street without getting hit will be the time you get hit. If you just celebrate the good all of the time, it will feel less good. If your zero is awesome, how could much be better? I’m done with metaphors to explain this. You need to look and laugh at the bad. It is a part of life – I would argue the most important part. It gives highs and lows definition.
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.