I suppose this ought to be about me.
I am 25 years old. I’m in law school. I have Classical type Ehlers-Danlos Syndrome (c-EDS).
That basic information tells you almost nothing about me. It does not tell you that I have a fire to do something to make the world a better place. I was once a half-decent recreational soccer player, but no better than that. I had the makings of a very good ballroom dancer, but injuries derailed that. I crochet, knit, paint, make candles, make jewelery – well, and a great many other things, it would probably be fair to just trail this off and say I’m very creative. I’m one of those rare people who is almost perfectly a balance between left-brain and right-brain thinking – I am both highly creative and highly analytical.
This blog is not so much about me as it is about living with my disability. To be certain, that does of necessity mean that some of ‘me’ seeps into it, but this is not entirely a personal journal.
I hope that perhaps I can provide a window into what life is like with a rare genetic disorder. Disability is something that is profoundly difficult to understand for a person who is ‘abled’. One of the things that you have to accept is that it is a fundamentally different life, and that some of your assumptions about life are not universal. If I say something that does not fit with your world-view, instead of shoving it away as wrong, try to open yourself a little and consider that it’s not wrong, it’s different, and that doesn’t make your world wrong, it just makes it not universal. (Of course, I do believe some things ‘abled’ people do are dead wrong – like the person who’s just running in the store for a few minutes and takes a disabled space because of their laziness. I don’t care how tired you are, those disabled spaces exist so that people who would otherwise not be able to go places can – not for your convenience.)
Don’t be afraid to disagree with me.
There are, of course, ground rules:
1) It didn’t happen for a reason. Pain and disabilities do not have a ‘reason’ behind them. There is nothing that ‘justifies’ them. Don’t ever say it happened for a reason. This is just not something I tolerate.
2) For those few of you who know who I really am, please keep that knowledge to yourself. This is intended to be very separate from my personal journal, and other places where I am identifiably myself. If you’re going to talk to me, please call me Kali, or Brilly, or BMBB. Something drawn from the name of this journal.
3) Play nicely in the comments. I don’t want flamewars. If you disagree, please feel free to say so! I’m fine with people disagreeing with me or with other people commenting. Just don’t be a jerk about it. Your worldview is not inherently right, and pretending like someone else’s worldview is inherently wrong is just irritating. Try to avoid ‘straw man’ arguments – where you put words in someone else’s mouth to make their view seem ridiculous.
4) Respect! No name calling, no mudslinging, no insults, no personal attacks.
It’s pretty basic, right? Act like adults.
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