Surely everyone deals with piles of paper in various corners of their home; or, at least I like to think I’m not the only one. It occurred to me this morning while searching for my glasses (my cat is fond of knocking them off my nightstand) and I paused to straighten a pile of papers on the floor beside my bed, that what is not so common is the fact that in this pile of childrens’ drawings, school assignments, random phone numbers, receipts, and long forgotten bills, were several pages of articles from obscure medical journals about microbiology – regenerative medicine – procollagen synthesis – aortic aneurysms, etc.
Every morning and every night I see that stack as I step over it getting in or out of my bed, but this morning for some reason, I saw the irony of it. There on my hands and knees, near-sighted and vulnerable, I realized for the first time (at least consciously) how incredibly and starkly unfair it all is – and that somehow in the last 12 years it has become so commonplace to me that most mornings I never even notice them. For a moment I was amused at the thought- then was reminded of the injustice of it all. And then, way back against the wall I saw my glasses – good try cat, but not good enough.Read Full Post | Make a Comment ( 1 so far )
Why in the world I think I have time to blog is beyond me – but then again, I’m not that good at managing my time. I just know that I always have a LOT to say when it comes to this subject; probably too much to say if you ask my family.
There’s not much point in going in to too many details right now about how I wound up here; it’s too close to my bedtime for that. What matters at the moment is that I AM here; stuck in a life with a “rare” disease in my family that turned my world upside down 12 years ago and still has it spinning sideways most of the time.
It is called Ehlers-Danlos Syndrome; Vascular Ehlers-Danlos Syndrome to be specific and for 12 years I have alternately ran from it, hidden from it, raged at it and completely ignored it. It occurred to me this past year that it doesn’t seem to care what I do; IT isn’t going away.
So here I am . . . in a staring contest with the monster in my closet – waiting to see who’ll blink first. I am, for the moment, over the terror it used to evoke in me, and more than anything am really, really pissed off at it. It took a good friend of mine two weeks ago – someone who was doing well; who was supposed to make it longer, you know – beat the odds. But the damn thing snuck up on him and got him in his sleep.
Walking away from my friend’s funeral, after having shoveled dirt on his casket, I could feel the anger starting to rise inside me – again. I don’t mean the normal-part-of-grieving-anger. I mean the anger you feel when you’ve been hounded for years and finally get sick of it. Like when the scrawny little kid on the playground eventually snaps and goes crazy on the bully – beating him to a pulp.
Maybe I’m just finally tired of being bullied; maybe I’m realizing that staying huddled in a corner with the blanket over my eyes is far less safe than I had thought. It is what it is – whether I hide or not. I might as well stand up – stare it straight in the eye – and give my best shot.
But for now, it’s my bedtime – conquering the monster will have to wait til morning.Read Full Post | Make a Comment ( 3 so far )