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.

Creators: Understanding your audience

It's not magic

Your audience is a collection of the people who follow your work, taking interest and ultimately buying your product. So how important is it to understand your audience? Well, if you don't have your own marketing team or money to dump into advertising, it's fairly important. If you aren't already considered some kind of guru or master of your craft, it's fairly important. Your audience is how you make a name for yourself. But how do you manage that?

Right now, you can break your audience reach into three forms; internet, local, and in person. Internet offers connections to far more people at great distances, but can be super difficult to navigate and gain the acceptance of those audiences. Anything in person is usually much simpler because you have the human connection that the internet lacks, but you are limited in access to people based on who is physically at whatever event you are part of.

Let's look at the internet audience. Everyone goes to the internet. You practically have the entire world at your fingertips. Or do you? You certainly have access to a great diversity of consumers. But there's a huge catch. Unless you are paying for advertising (and this session of my blog assumes you aren't) you can't just jump into some forum of people and say, "here's what I'm selling, everyone!". It won't work. That's because the one thing you have to understand about the internet audience is the universal bloody eyed hatred of spam. This hatred is so strong that it makes internet social marketing a veritable mine field.

This is even if you are talking to people of a group that is all about the product you have created. That's even if the forum you are taking part in, has clear rules that allow you to share your project in certain time intervals. It's not evil to be excited about your product. It's a great achievement for you. But this is the rule you need to follow.

Be a person first. People on the internet want to know that you are personally a human being they can take interest in. That means the want to have idle chat and basic entertaining post share. They are going to want to that for a significant amount of time as well. After all, how long does it take to get to know someone. They want to know that you aren't just a market bot on the net. No, just saying you aren't isn't going to work.  This is how you market yourself as a person. Just take part in the average discussions and present yourself as an interesting human being. Be yourself as much as you can.

Local audience is important too. This is audience you can go out and spend time with in person. Making local connections branches out into more local connections. But what's the secret? Be interested in other people. Learn about them and their projects. Be supportive of their projects. Often enough that will come back around to you. Be social and prepared to just shoot the breeze. Be personable. Remember that in many situations where you are approaching other people, the dynamics are the opposite of the last point I'm about to make.

The best way to find that "in person" audience is at events like conventions. The primary difference is that people are now coming to you to find out what your product is. It's a big part of the exact reason they are there. If this goes well, word of mouth will carry news about you. The more events you can go to for your book, game, etcetra, the better. This is practically the polar opposite of trying to market via social media outlets.

To sum up, remember that your audience is made of people. You need to understand what they want. They want you to appeal to their interests. Find the people who have the interests that match your product/project, and you will move forward (so long as you remember they are people first).