This week Sept 9-15, 2013 is National Chronic Illness Awareness Week. Actually, I think it’s worldwide. And I think it’s being called Invisible Illness Awareness Week now –> http://invisibleillnessweek.com/
I have a special blog called spaz at http://jankita.blogspot.com/ for my ‘drag’ posts. I don’t write a whole lot of those for the public, but when I do, I make sure they don’t suck to read.
pill phobia at its finest –> http://jankita.blogspot.com/2011/03/pill-phobia-at-its-finest.html
blinking in the light –> http://jankita.blogspot.com/2012/07/blinking-in-light.html
walking in the air –> http://jankita.blogspot.com/2012/08/walking-in-air.html
I like it dark –> http://jankita.blogspot.com/2012/12/i-like-it-dark.html
I’m blue –> http://jankita.blogspot.com/2012/12/im-blue.html
aspie overload –> http://jankita.blogspot.com/2013/09/aspie-overload.html
I know it’s hard. Believe me, I KNOW.
There are two ways to look at life- selfish vs. selfless. The biggest challenge I ever had was figuring out how to cut through all the overwhelming pain, fatigue, and brain melts to be kind to other people. It’s so easy to fall into the dark pit where you think because it all sucks for you that the rest of the world owes you and has to excuse you. Um, no they don’t. No one owes you anything, and there is no excuse for treating other people badly, no matter how crap your own life is. I don’t care how unfair life is, if all you can do on this planet is whine and moan and treat other people badly, you suck.
I had to face this. I had to own the fact that I suck. I had to accept that life is unfair. You cannot truly go on until you take these things into yourself and digest them down into something you can turn inside out into being someone other people actually want to be around. (That sentence was a handful.) No one wants to be around you when you suck. And no matter who you are, life will always feel unfair. You don’t get context until you go through stuff yourself, and any time something doesn’t go the way you want it to, it sucks. Simple formula.
There is no contest. I’m not out to win My Life Sux Worse So You Have To Be Nice To Me More Than I Have To Be Nice To You. But some people ante up like it’s a contest. We each have a headache, mine sux more than yours, ok but mine is on top of this bad day I’m having, and we go on and on building up these monuments to our bad days. You know what? There is nothing more depressing than trying to win the worst day contest. Just everything sux, let’s move on to another subject, ok?
I’ve had 30 years of life altering suck. But I noticed some people have way worse suck than I have. I may live with pain levels that would have other people thinking suicide, but I’ve never been in a fire. I’ve never lost my own child. I’ve not yet had cancer. Yeah I’ve gone through stuff, but there is no comparison between me and someone who has been in a fire and had reconstructive surgeries and still all scarred up. They have their own suck, I have mine. Same with any other pain, grief, and despair. Sooner or later, I don’t care who you are, your life will suck in ways that you never dreamed would ever happen to you. The sucky stuff opens our eyes and hearts and challenges our souls.
I wrote a sorta lengthy post on my bluejacky blog a few years ago called “Synchronicity, Suicide, and the Eyes” –> http://bluejacky.xanga.com/2008/07/23/synchronicity-suicide-and-the-eyes/ There comes a point where we ask ourselves if being here on this planet is more about us being worth the air we breathe. It’s important that we get past that yawning black cavern of self pity and see the light around us. Even with full blown suck, I’m so glad I got the chance to be here.
Chronic Illness or Invisible Illness Awareness Week, whatever you want to call it, I’m glad another group is ganging up on the public because there really does need to be more thought out there about stuff all around us that we might shrug off or take for granted. For instance, I have difficulty pulling or pushing doors open in public buildings, so I need the little handicap button thingy. One year I had a lot of difficulty moving quickly and got smashed in a door in a big beautiful bank because the button was so far away from the door that even an able bodied person without pain would have to walk quickly. It hurt real bad and I cried. It was mortifying and embarrassing and brought all the wrong kinds of attention. There is no dignity in being bruised up by an automatic door on a day you can barely keep it together in the first place to run your errands. So yes, I think Awareness Week is fab and helpful and whatever.
But I’m just saying that we’ll get more awareness if we aren’t hateful and crabby and snotty about it. It’s important to remember that we are ALL human, and that we ALL need to be kind and good at communicating. Maybe it’s not fair that some of us have to do it through a fuzzy static of crap, but other people will listen better if we can be cool about it.
It’s very hard sometimes to be nice when everything sux and it’s overwhelming your brain. I know other people can find me a little shocking on bad days. So my contribution to Invisible Illness Awareness Week is to beg the public to please not take me personally, please blow my crabbiness off when the suckiness is taking me down, please forgive me for seeming like a jerk when I react to something minor, please understand that underneath my reaction is my horrified recoil when I look at myself and then the overwhelming depression that I’m ugly when I suck. I want very much to be wonderful and sweet and for you to like me, but some days that feels almost impossible. So please love me anyway, even when I suck.