First post

I've run a few blogs before -- to no real ends. I've not had 'success' with any of them, either. I'm not specifically talking monetary success, but my definition leans more towards 'up-keep' and 'determination'. I've learned a lot about myself over these past few years. After being diagnosed with a rare and incurable connective tissue disease called Ehlers-Danlos syndrome I thought my life would get better. I always thought answers were missing. Like finding out what was wrong with me was more important than why, or how.

Although this is true, in a way, it hasn't manifestly made things easier. I have always contended that putting a name to suffering is vastly important; to do otherwise would simply be masochistic. In the years preceding my diagnosis I had encountered this same question over and over again: why do you want to be diagnosed with an incurable disease with no treatment? Whats the point? I could never really come up with a good answer on the spot, and to be perfectly honest, its probably something I'll have to come back to. But I'll give you the answer I told them: because its true.

I understand that these 'differences' between 'normal' and 'abnormal' bodily sensations are largely arbitrarily named, but that doesn't mean the distinctions are totally useless. I understood from the get-go that my body could do things that weren't normal. I had this intuitive 'gut-feeling' that things were off. So I figured it stands to reason if some things are off, more probably are too. So I went looking. I had come upon EDS by accident a few years before and just brushed it off as impossible -- at that time I was of the camp of people who actively engaged in thinking the world was divided by this evenly and easily recognized polarity: some things are, and others aren't (allowing the subtleties of truth allude). A few years later I came back to that distant EDS diagnosis, only to find that it totally made sense.

This repartee between myself and intrigued physicians has become more eloquent, I guess. Now I respond: well, you see,  EDS represents a multi-systemic disorder with a constellation of symptoms that often culminate in substantive disability, requiring special treatment in the case of surgery; even treatment with broad spectrum (that is, medication that many take -- even those unaffected by disorders of connective tissue; not to be confused with broad-spectrum antibiotics) protocols requires a certain penchant and special touch. I tell them if something happens to me that requires surgery (which is currently the case) I would like to have the heading of a recognized disorder on my file so that the surgeon or physician can reflect on relevant case material from other people with the disorder facing, or having faced, similar issues. In effect I would rather someone employ an educated (however slightly) representativeness heuristic rather than an availability heuristic.

I started talking about the fatigue of writing, and I'd like to return to that. This post isn't specifically about my struggles with disease, but rather with my hopes for future posts delineating my struggles with disease -- among other things, too. I can't tell you how many countless hours I've spent wasting my time surfing the web thanks to add-on's like 'stumble-upon'. I have to say though, I've come across some really good stuff while 'wasting my time'. One thing in particular: how to become a good writer. I've always considered myself to be a fairly good writer; one that may fall under the category of 'slightly above average'. Writing takes a lot of attention, and a lot of determination; two things I don't have in abundance.

Its my hope that I'll continue to write in here. Right now I've rather optimistically dedicated myself to 90 minutes of writing per day. As I'm currently disabled by EDS, pending further treatment, I have the time; its now just a matter of making that time valuable.

I want to end each post with a good quote. Quotes can be very valuable when used in the right context, but they can also be horribly banal when used in the wrong one; think of how many times you've probably read a quote by Einstein in helvetica over a picture of his face on some post-modern hipster blog -- undoubtedly the among the foremost of his professional aims. To those of us who are critical thinkers,  this is annoying. I will try my best to avoid creating such quandaries in my own writing, and I hope you will dedicate yourself to such practices in your own!

"Men's wretchedness in  sooth I so deplore,

not even I would plague the sorry creatures more."

Goethe's Faust