Saturday, May 21, 2011


If you're here, you either have a chronic illness, or are curious about a different view of chronic illness. Welcome!

I'm here because I want to present a positive spin on chronic illness. Being sick sucks. Being sick without any end date sucks more. If you want to read about that, there are plenty of blogs out there, my old one included. But that's not this blog. 

A pessimist is presented with a room full of poo. "Aw, man! This is terrible! It's stinks, it's attracting flies... What a mess!"

An optimist is presented with a room full of poo and immediately starts digging: "with all this poo, there's gotta be a pony in here somewhere!"

We're gonna find that pony. Here, in this blog, I'm going to share with you my hard-earned experience in how to make this look awesome. I'm going to share with you what I've learned through trial and error. Everyone's experience is different. All the facts are different. But the feelings remain largely the same: helplessness, isolation, persecution (even if we know we did nothing wrong),  loss of identity, loss of support, fear of what's to come, wanting understanding, wanting dignity, et cetera.

The healthy world doesn't get chronic illness and never will. I didn't until it happened to me. Chronic pain is even more of a mystery until we experience it first-hand. I've been there where the pain was so bad and lasted so long that suicide seemed like a viable option. If I was given the chance to get better, I'd take that first, of course... But sometimes there are places so dark that it's nice to fantacize about it all being over even if you'd never take action on it. That's what the professionals call "passive suicidal ideation". 

And it's hard to pick up the shattered pieces of your heart and soul after going through epic experiences like that. It's hard to remember who we are because who were before is gone. That innocence is lost.

Pain is isolating. Chronic illness is isolating. No one sees the world like we do. And I don't even see the world the same way another chronically ill person does. We each have different threats, different physical needs. The facts may be different, but the feelings are often the same: alone, different, invisible, worthless, burdensome, etc. Some of us, myself included, live without the promise of a treatment, let alone a cure. We trudge a long, dark road to our inevitable (and frequently messy) demise.

Yes, this sucks. Yes, it's not going to get better. But... So what?

The key to walking through hell is: don't stop.

It's pretty impressive what I've actually managed despite what I've been through. I could compare myself to other people and notice all the things I'm not doing, but what I really should do is look at what I've been through and judge it on its own merits. Sure, I'd love to do more. I'd always love to do more. Normal... just never gonna happen. Reaching the appearance of normal is a feat in itself. 

Yeah, I can look at my life as a tragedy. Impending doom! But there are tragic heroes that I have loved. My love for them is not in their success, because they *don't* succeed. That's the nature of tragedy. But it was their spirit of ownership and perseverance that I loved. Western culture doesn't really promote that kind of story. It doesn't generally make for good TV. Critics love it, but most people prefer buying fantasies with tidy, triumphant endings. But I loved those guys.... Heads held stubbornly high despite the odds.

So that's my goal... and I hope to pass a little insight on to you. Whatever you have going on in your life, make this look awesome....

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