|Clive Burr, gone too soon|
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.