Iron Maiden founder dies of Multiple Sclerosis

Clive Burr, gone too soon

Let's say you have dreams you want to accomplish in life, like writing books, designing games, or heck, anything. Then lets add something to that, namely a life threatening disease that could take you out anytime it feels like it. Let's put this in perspective.

Do you understand how your body works? At the very end of everything your body does, responsible for everything your body is capable of, is your nervous system. Multiple sclerosis (at a laymen level of explanation) is a disease that eats your nervous system. Now pause and think about that for a second. Every single function of your body, your organs, your senses, requires your nervous system to function.  Without the electric charges of your nervous system, your heart will stop beating. UNDERSTAND? At any time, if you have MS, it could damage the nerve actions required for your lungs to work. It can screw up your swallowing reflex and choke you to death. Got it?

That is what I live with. People tell us to shut up about having MS; that we are just full of excuses. Oh if only that were true. You see, you can get therapy for being "full of excuses". And if I were full of excuses, guess what, you'd never see me complete a damn thing. And what brought all of this about today was this story:

Clive Burr, founding member and drummer for Iron Maiden has died of MS at only 56 years old. He was diagnosed in 2001. Treatment for MS made it hard for him to pay for his home and general life. Think about that. He had amassed something of a fortune by being one of the worlds greatest heavy metal drummers. MS took it all. Would you say his problems were just excuses? Really?

I take copaxone shots to stabilize my MS. They cost my insurance nearly 6000 dollars a month. And still, my legs randomly go out on me, I have strange gasping fits, cognitive fogs, dizziness, and severe fatigue for no discernible reason. I have hand tremors that ruin my artwork and make even general things difficult. My insurance, medicare, lists me as "catastrophic" in coverage. It's a twisted situation.

Now, let's set aside my personal dreams for a moment (namely my universe of Galaxy Zento and all that it has going for it with 4 published books and a board game). I'm also a disabled parent of a young man with autism. Without being able to go out and work a regular job to teach him about life, I have to do something. I can't have him thinking that a disability like mine (without letting him know how easily it could kill me) means giving up on lifelong dreams or even making an effort at life itself. I can't be the disabled Dad who stares at the walls all day. That is what Galaxy Zento is for. It's the job I do to show him how to live, in spite of what holds him back.

And every time someone tells me my artwork isn't good enough or my game isn't good enough to be given any consideration, they actually help me with him. Because when I don't give up, just because people hate on my work, it shows him something. And I can't just wait in life until I can afford to pay someone else to do the artwork. If you can't see why after all you just read, I don't know what to tell you.

I know my art isn't the best you can get. It's cartoony and not seriously "graphic". Its not like a Rembrandt painting. But it's also not like I don't work hard. I work very hard and beyond my capabilities at times. That means I hurt myself to get things done. Hard to avoid actually.

But every single day, I have to wonder if I am going to be able to function for the whole day, or just part of it. That's because MS can take me out at any given level of exhaustion at any given moment of time; no matter what I've actually been doing. I could totally just be sitting on my ass, doing nothing, and crash anyway.

Is it so terrible to want people to understand? I mean, I get it if someone just doesn't like my work and they turn their nose up at it. That's going to happen. But for those who tell me I'm full of excuses, that actually stings at times. Maybe it shouldn't. But over 400,000 people in the US alone have MS. And it totally depends on what area(s) of the nervous system are damaged for each person, but its capable of killing you outright.

Famous people who died of MS

Celebs with MS

Even bigger list

Just to be clear; I don't expect anyone to jump on a bandwagon and buy things from me just because I have MS. I do want people to realize that I'm not your average game designer, not your average artist, not your average author. I'm not even your average parent, husband, or human being. It's understanding and awareness that I'm after. What would you want in my situation or if you have MS. If you do have MS, what is important in awareness for you? Feel free to post in comments.

What I used to be.

There is no doubt I always wanted to do my own stories, comics and games. I was taught by my Godfather to make my own games when I was about 7 years old. Ever since, it's always been a bright idea to me.

But then you grow up and have to become something else. You have to support yourself, work a job and take care of business in life. I did this by my other drive in life; helping people. I started out as a security guard and joined the Army. My unit was Military Police so I hoped to learn more from them as well. Every avenue I sought out. I wanted to be a detective even though I was told I would never make it. But then, one day I did. Just not the conventional way.

I became an Animal Control officer, yeah you might say "dog catcher". You might say "dog catcher" and laugh, but I guarantee you, the cases I worked were no laughing matter. I worked side by side with all forms of emergency services. I've been to the sites of house fires, murder scenes, suicide, drug busts, and all sorts of warrants served. I had no arrest powers myself, but I wrote real citations to court for animal cruelty and neglect as well as other infractions. I was recognized for my efforts to help others even before that job, but these are solid examples of my work.

This just shows a couple of general adventures and weird happenings. I had a lost bird that managed to tangle its head in the wiring of it's carrier. Fortunately, it didn't feel bitey at all as I helped it retreat. The weasel was loose at the airport and everyone thought it was someone's pet ferret. They had managed to scoop it up in a box before I got there. Imagine their surprise when I correctly identified the critter after getting my gloved hands on it. Poor thing was relocated to much better running grounds.

This woman fell in a city park and her trained dog wouldn't let any emergency personnel near her. Worse, she had fallen on the leash, making it nearly impossible to use it to get the dog away. Maybe it's because of all the hours we worked with animals, but we were able to calm him down and move him away. This clipping is from the local newspaper. The grateful daughter wrote in because, yes, we did take steps beyond the norm. We didn't impound her dog. We took the dog to her home with her keys and put him inside. The keys were returned by a city police officer. This was my job before health conditions caught up to me.

I was the reptile officer and no other officer minded that fact at all. When ever someone had a snake call, they offered it to me where ever I was at. I only needed help moving one once and that was because this guy weighed in around 200 lbs. No worries. He was docile. He had been left abandoned in a shut down stripper bar. Apparently the ladies would pole dance with it. He wasn't put down either. He made his way across the state for educational purposes.

Some guy was keeping this cayman in his bathtub and was going to throw it out in the snow because his girlfriend was sick of it. I convinced him that a ticket for an illegal animal was better than a ticket for animal cruelty plus abandonment. Save the little guy's life in the process. Nebraska winters can be brutal. It made it to someplace where it didn't have to be killed as well.






After I served for 6 and a half years I went through some very hard times and my work ability suffered for it. I still strove to help others. I was working as security for a bar and we had just closed. That's when we heard the shots. I looked out the front door and saw a man face down in the street. People were running all over. I ran out to him and administered first aid until the ambulance arrived. No, the shooter had not been located yet.

But now, I can't do any of those things anymore. Even today, I want to be as much help to others as I can in the ways I can. So I help online with autism and MS advice. And then there's my games. I want to help people through them as much as I can too. I know that sounds weird, but it drive me. It allows me to show my son that I can still do something. Life has changed so much and yet I strive to keep being me. We found homes for three kittens in the last year because old habits just don't die. I believe I would still "run" (yeah, I can't run anymore) out to someone hurt even under dangerous circumstances. But alas, I shall end this one before I ramble completely. I really just want people to understand.

In spite of Multiple Sclerosis

Really, it's more like 'in spite of anything barring my path', but I think you'll get the idea. It's helpful to remind myself what spurs me on to overcome disability and be even borderline productive. With the seasonal change bringing barometric changes, the cognitive fogs have been slapping me around. Imagine allergy season getting you moderately stoned every day instead of plugged up. Or consider that your cognitive abilities (to think clearly) are plugged up instead of your sinuses.

All the more reason to fight like a cornered animal.

The less you do, the more MS takes away. The less you use any particular life skill (especially physical) the faster MS takes that away. You have to pace yourself, but definitely don't want to just give up. Even so, MS, or as people are calling it now 'the MonSter; does a lot of damage to a lot of people. It's not so easy to just overcome.

I really hate the fact that I can't work a regular shift job. I have to be able to rest at any given time my body requires. I also have to be able to move around because my nerves go haywire from time to time. So I work from home and put my power into things I always wanted to do.

Wanted to write books about my fantasy universe: published 3 of them so far.

Wanted to make my own board/card games: published one board game so far.

Want my son, who has autism to understand that Dad is still productive: working so far.

My hands don't want to do my artwork. I force myself forward anyway. I will fight for what I love to do until I can't sign my name anymore. That's why I dedicate my artwork to everyone who fights MS or other disabilities  to keep doing what they love to do. That includes just being able to get out of bed on any give day.

You have to have some spite against the disease. You really do. It's amazing what you can accomplish if you just turn Hulk against MS. Decide that MS can go to hell and you're going to make it across the room today (or to the park, or whatever). Yeah, I'm stubborn in some of the wrong ways too, but you kind of have to be. What are the wrong ways? Well, you pay for what you do in a day when you have MS. The harder you exert yourself, the harder MS tends to hit back. So if I got outside and dig that rotten portion of tree root sticking up in my yard, I'll probably be physically and mentally useless for about three days.

I'll probably still try to do it.

Just to spite my MS as if it were an entity that could understand said spite.

So, between showing my son the importance of never giving up and giving MS the finger; you pretty much have my reason for doing anything. What do you do in spite of your MS? Let me know in the comments. I'll end this with an uplifting song:

Touch ups

I'm almost through the touch ups on the Chessmen novel. I've found a lot of problems with my "it's" and "its" being mixed up. I really don't know why I keep doing that. Good ol grammar program does help by marking it at least.

We have a copy of this years Writer's Market and I need to start going through it and seeing what there is in information on agents and publishers.

There's still a lot of illustrations to do and I'm adding pics over at Deviantart. For the fan page, I've actually caught up with myself and now have to post my custom miniatures to fill in while I do more illustrations.

I have had a couple of artists show interest in the Guest Artist project. It will take time.

The current count in three weeks at Deviant art is 359 page views and I'm on four peoples watch list.

On the Facebook fan page, current likes are at 38. I would really like to see that number climb some more. People are looking and I love that. I've had some very nice correspondence and I love that too. There has been a very nice show of support. It's still a good start, and still early too.

So, it's just a short update today as I catch up on a few things around here. We just got our dog home from heartworm treatment and I had to make a hundred mile trip yesterday to a neurologist. As for that dr trip? There's more testing to do. I had lots of blood drawn to do an "auto-immune" panel. An auto-immune" condition is a disease that causes your immune system to attack itself or other points of your own body. MS is an auto-immune condition, but we still don't know if that's the one we are dealing with.

Looking forward to posting more soon!