August 7

Fighting Invisible Demons

Those who know me know that I try very hard to be funny, upbeat, and generally in a good mood. Those closest to me know that, behind this, is a complex structure of coping mechanisms. Depression, rage, fear, all are also parts of me.

Those people closest to me struggle with similar demons. Many of them are blessed and cursed with the ability to understand the larger patterns, to see the story. It is a dance along the cliff between sanity and insanity, and it takes phenomenally strong people to dance this line without falling off.

It has been said that ignorance is bliss. On the inverse, knowledge is power. Both have their dangers. Is one a sheep, to be led willingly to slaughter, or is one a wolf, to be hunted by the fearful?

Neither. One is human, and to ignore the responsibility that comes with that is to sacrifice our one and only valuable birthright; sentience.

So, the only way I stay sane is through learning, logic, and force of will. And the occasional joke.

May 30

Meltdown

I have now been in the hospital for about three and a half weeks.

I am really, really tired of being in the hospital. The people are nice, don’t get me wrong, but I want to go home. At the moment, I may end up at another rehab facility, but I would much rather be with my wife in my own space.

Unfortunately, getting in the apartment is a problem, as I am not walking yet. I hope I am by Wednesday.

The bigger problem is that tempers are short and I keep getting drawn into drama that I really should not be involved with while in the hospital. So, I’m going radio dark for a while. I’m shutting down my connection to Facebook, email, even shutting off my phone. I need a break, I need space to recover and start walking.

If you need to reach me, leave a message. I’ll get back to you, eventually.

March 28

Gearing up for a Kickstart

Getting ready for the kick.
Getting ready for the kick. Source: Morguefile.

In a few short days, I will be launching my first Kickstarter campaign to fund Nova Astrum, a game that has been rumbling around inside my brain for nearly fifteen years and sat its first early alpha about two years ago for my capstone project. Since then, I admit, I have not done much with it; having Multiple Sclerosis has taken a bite out of my life. The deep depression that it has caused took me a while to dig out of. I won’t go into the grisly details. Best leave the wreckage behind me and move on to the brighter tomorrow. Unfortunately, there are some who will not be joining me. That was their choice.

Meanwhile, Nova Astrum is gearing up to be the beginning. Of what, well, we’ll see. Don’t get me wrong, I don’t expect Exploding Kittens, but Kickstarter has become the premiere crowdsourcing source for projects like this.

Consider this to be a last call for volunteers to get in on the ground floor with Nova Astrum. You can contact me on the contact form.

I will try to blog as this develops, so this blog may become the inside view on how a Kickstart project works. Stay tuned!

March 23

Passive Censorship, Religion, and Facebook

Dislike
Not everyone you meet online is going to like what you have to say.

Recently, I was the target of what I call passive censorship on Facebook. I belonged to an MS support group. Although the rules specifically state no posts about religion, there were allowances for prayer requests, and several posts a day talking about God. However, anyone talking about atheism was warned, their posts deleted, and if they did not take the hint that secularism was not allowed, like me, they would be banned, even if they followed the other rules. One admin claimed the group owner was an atheist, although nothing was heard from them about the whole thing. So, what the heck is going on here? The same kind of thing that happens in a lot of groups, and many people accuse Facebook of doing; passive censorship.

For more than five years, I was an admin on a very successful debate group on Facebook. It was eventually destroyed when a Muslim posted an image of someone being beheaded that was not caught by the admins and he later reported it for graphic violence. That was more active censorship; he very clearly intended to censor our speech. Passive censorship is more subtle, to the point where the person censoring may not even notice it themselves. It usually takes the form of rule manipulation to try and silence speech that is disagreeable. In some cases, this can be admirable; a few years ago, a group of pastors here in Indianapolis limited a Klu Klux Klan rally to the statehouse by registering events at all of the other public spaces in the downtown area. There have been cases where people have blocked access to the WBC without breaking the law. In a way, these are, in themselves, acts of free speech and defiance. The difference is that they do not prevent the speech of another; they are not full censorship. They do not eliminate the speech, only limit its scope.

Additionally, they do not show preferential treatment to one group over another. Granted, if I were to go into a Presbyterian church service on a Sunday morning and proclaim Allah as God, I would be met with, at least, a rightful request to leave. I would be on private property. directly violating rules and upsetting the reason people are there. However, if there was to be a computer trade show, and only Christians were invited, that would be passive censorship.

People have accused Facebook of doing this kind of thing, usually for political purposes. Recently, there was a case of a twelve year old whose account was removed. Allegedly, it was because of a post critical of Obama, but anyone who has read the Facebook TOS knows that the cutoff age is 13.

The thing is that passive censorship requires vague rules to begin with. Without vagaries, there can be no errors of interpretation, and no “benefits of the doubt”. That’s why legal contracts are so specific, long, and carefully worded. Such as a Terms of Service contract.

So, in the case of the MS group that bounced me out, well, so be it. You’ve proven to me that your adherence to your religion is more important than your compassion for your fellow man… which is, ironically, what your religion is supposed to be about.

March 22

Fighting MS without God

Orange Swirl
Orange Swirl. Source: Morguefile

One thing that has cropped up during my search for a wider realm of support during my battle with MS is the number of people who turn to religion as a support structure to help them through their own personal battles. While I have no problem with whatever one needs to help them through fighting a chronic disease like MS. A problem arises when there is an expectation that everyone else has to offer up support only in that way, and no other.

My treatment by others set aside as a needless digression, how do I fight a disease so far outside of my control when I have no belief in the supernatural?

I look to those things in my life worth living for, worth fighting the MonSter for. My wife and children are at the top of the list, with my parents and friends close behind. All very real, all very here. I place myself third, along with my writing and programming goals. These are enough to keep me breathing, keep me fighting, keep me pushing myself to my feet when I am on the floor and struggling, keep me taking my meds and doing my injections.

My pain may be great, but it is just pain. My tired and sore muscles are still mine, even if they don’t listen well.

I don’t need to look up to the sky for inspiration. I don’t need a god to take my burden; I can carry it with the help from those I love. I don’t need hollow platitudes or the empty promises of prayer to get me through the day.

Do not pity me for making it through without relying on a god. Realize I am making it through, and wonder how a simple human could do something like that.

March 8

MS and Zombies

The zombies don’t bother me much. They ignore me. I don’t know if they can sense the MS somehow, or maybe my shambling makes them think I’m one of them. I don’t really care.

I’m a little afraid of other humans. I’m hoping they won’t think I am one of the zombies, so I make sure I am well groomed before I go out. Zombies do decay over time. Most of them look like a cross between extras from Les Mis and medical waste.

Anyway, they walk right past me. When the whole thing started, I resigned myself to my fate. There was no way I could run from them. If they wanted to eat me, I was easy picking. When the infection hit my neighborhood, I figured I had a good run. Forty, never married, but happy. Life was hard but not impossible.

But, they didn’t even approach my house. I counted myself lucky.

When I ran out of food and water, I had to go out to get more. I cleaned myself up as best I could, and headed to the gas station down the street.

In was a matter of minutes before the first zombie appeared. I prepared myself for the end. I could smell the rotted meat smell as it came closer and closer…

…and walked right past me. Didn’t even look at me. Like I was invisible.

Several times in the two hours it took for me to get to the gas station, I prepared myself for death as either a zombie came close to me or I came near a zombie, only to have the zombie I thought would eat me simply shamble past me. Or I would shamble past the zombie. Either one.

When I got to the gas station, I filled my backpack with as much nonperishable food as I could. Tried not to go for just the candy, although that’s what I really wanted.

I sat down on the bench out in front of the gas station to think. I could stay in my house, which would require regular trips to get supplies, which were exhausting. I just wanted to lay on the ground and sleep for a few days just from having to walk from my house. So, walking was not the best idea for me. Problem was, I had no car. I would have to figure out how to get one.

As I sat there, an SUV pulled up carrying five people. A man, two women, and two teenagers piled out. The man pointed his gun at me. I raised my left hand. My right doesn’t work too well.

“Both hands!” he shouted.

“I wish I could,” I said, “I’m disabled. I’m also not armed.”

One of the woman came up to him and put her hand on his arm, lightly. He lowered his aim. At the ready, but not pointed directly at me.

“My name is Albert. You can call me Al,” I said, trying to be friendly.

No one responded.

“There is food in the station. Help yourselves,” I said, trying to wave, but doing it with my bad hand.
“What is it? Were you bitten?” the man asked.

I smiled. “No, nothing like that. I have multiple sclerosis.”

They stayed the night. We all huddled in the gas station. The zombies were a lot more interested now that there were five healthy people with me.

In the morning, the older woman, Anna, asked if I wanted to join them.

“Thank you, no. I’ll just slow you down,” I said, only a half truth.

As they drove away, I was grateful. Healthy humans drew the zombies. Who knew what would happen in the middle of an attack?

March 1

Triangles, screaming legs, missing hands, and snow

Look deeply into the network...
Look deeply into the network…

This has been an interesting week in the Aaronverse. I think the highlight has been the two hour span last night, where I got to spend a white picket fence style two hour session with my oldest helping with homework. Sure, it was over the phone, crossing two time zones, three states, and discussing math that I either never learned, did not remember learning, or did not pay attention to when I was learning it (and so, had to relearn it). And it was followed by playing a pseudo version of Cards against Humanity online, but it was still bonding at a level that I missed a lot of being a divorced father.

My legs, my left leg specifically, has a build up of fibrous tissue that is painful but I have to wait for the it to heal naturally. Loos like a weird alien has latched on to my leg.

My right hand has gone to sleep, probably due to MS. This is really not good and it is already causing problems with my typing.

Winter also decided to show up to Indiana right at the tail end of February, bringing with it blizzard level snowfall and chilly temperatures, though, not exactly at the same time. Seven inches of snow on the ground outside as I write this, and the temperature is a balmy 271 degrees Kelvin outside (28 degrees Fahrenheit or -2 Celsius for you scientifically lazy peeps), even though it was colder earlier in the week.

February 28

In Memory

Leonary Nimoy. Source: ABC News
Leonary Nimoy. Source: ABC News

We have seen the passing of one of my personal heroes this week, Leonard Nimoy. To honor him, I watched the first five Star Trek movies. The funeral scene in Wrath of Khan made me cry, as did several of the other scenes related to death. I told my oldest that he was one of my heroes, and I realized he was. His views on life, both in and out of character, helped me through some dark times in my life. I mourn his passing.

I have already seen people speaking of him in Heaven, and some dismissing him as an atheist. From all of the information I can gather, he was a lifelong Jew. So, yes, he may be in Heaven, but he is not hanging out with Saint Peter. Sorry to dash your hopes of playing pinochle with him. To be honest, I don’t know if that was a game he liked or not. I could see him enjoying many different types of games. Maybe that is my own projection.

I’m sorry that it has been a long time since my last update. My heath has been an issue; I got a pretty severe head cold, and, with Multiple Sclerosis, it makes everything more complex. When the fever one is running makes it hard to move or think straight, blogging sometimes takes a hit. Thankfully, I survived it, although our finances have taken a hit, with my lovely wife having also been sick and having to take some time off. So, to cover some of my ongoing medical expenses, I have had to resort to a Gofundme fundraiser. Links are to the right.

Yesterday, I woke up and my right hand had gone all pins and needles. It is a new symptom, a departure from the slow decline of my left side, and something quite worrisome. It will probably take me some time to get used to the way my right hand feels now. My typing has slowed, and I am considering teaching myself touch typing with the new condition to improve my speed. Coding will be difficult, but I have too many projects to be slowed down by something silly like a disability.

Continue reading