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[GUEST POST] Special Needs in Strange Worlds: Peter Orullian (TRIAL OF INTENTIONS) on Disease and Debility

SpecialNeedsInStangeWorlds[1]
peterorullianPeter Orullian has worked in marketing at Xbox for nearly a decade, most recently leading the Music and Entertainment marketing strategy for Xbox LIVE, and has toured as a featured vocalist internationally at major music festivals. He has published several short stories. The Unremembered is his first novel. He lives in Seattle.

Disease & Debility: The Blast Radius

by Peter Orullian

As I got set to write this article for Sarah and her Special Needs column, one of those life convergences hit me. I’ve written about these before. They’re uncanny. In fiction, they can come off as the author trying to manipulate the reader, and often they read as unbelievable.

But here’s the thing. I told Sarah I was going to write about cancer, and relate it to a topic about characters in a story who are close to but unaffected by disease or aliment. I know about this, because a lot of people in my life have battled cancer recently. And all these real-world stories don’t have happy, triumphant endings. Though, some do.

Then, the day I was set to begin this article, I booted up Facebook, and the top image was of a friend who’d just shaved her head . . . because she’s got cancer. In the picture, her little girl was kissing her bald pate. I shut my eyes and said, “Fuck.” Worthless thing to do, but about all I had at the moment.

So, let me try this, and see how it goes.

About the time my father-in-law was in his last few weeks of life (dying from liver disease), my mother-in-law was diagnosed with stage IV cancer, metastasized. She’s a strong woman. A kind woman. And about the last person to deserve such a bugger of a disease. But it came anyway.

Now, I can’t even begin to fathom what that must be like. Though statistics seem to suggest it’s not entirely unlikely I might one day. But what I am closer to is how it’s affecting others. My wife. My kids. Me. We’ve had her to our house for stretches of time to stay with us. To make memories. I’m mostly gone, working long days at Microsoft. But what I’ve heard is interesting. Wonderful, simple, common conversations, as if to defy the disease. Also, silences. Those I don’t like. Silences, when talk runs out. They’re not frequent, but they come.

My point is that as awful as a life-threatening disease or debility is for the one affected, there’s also a blast radius. The disease can also inflict collateral damage. You can try to be strong. But it’s hard not to give an inch.

I know this, too, because my wife has Multiple Sclerosis.

I remember a particular Saturday when she was gone, and I was sitting beside a sunny window in my writing office. It was quiet. I could see those motes that laze in streams of sunlight. And I decided that instead of writing, I was going to research the disease my wife had just had confirmed.

I spent hours reading from legitimate health sites. And what I learned . . . well, I think I shut my eyes and said, “Fuck.”

Now, many people with MS do fine. There’s a stripe of the disease called “relapse, remitting,” where there are occasional exacerbations that—for the most part—go away. But there’s also this business of the disease always progressing inside the body. Inside the brain. Lesions.

It’s one of the times when I’ve wished I could take her place. I love her. I’d rather go through whatever’s going to happen, than have to watch her go through it. This isn’t uncommon. Many of you have gone through something similar.

So, then, what about writing and fiction?

I just completed a story for an upcoming anthology. The main character is an albino with brittle-bone disease. He’s also rather old. So, you know, not a young chosen-one thingy. But he’s got a wicked intelligence and ever more wicked sense of humor.

And he managed to marry a lovely woman and have a life.

But along the way . . . well, there’s a blast radius. There are consequences for his wife because of her love and relationship with him. She forgoes certain opportunities. She winds up abducted, among other things, due to her association with the man. And he, in turn, has to do some rather dark things in an effort to get her back.

All that said, he was a blast to write. Irascible. Cuttingly bright. Impatient with upstart youths. And one hell of a debater. And as the story comes to a close, he posits quite a thing. A potentially world changing proof—he’s a philosopher living in a society of science colleges, e.g. astronomy, physics, mathematics, etc. The place is called Aubade Grove, as it’s a central part of my book Trial of Intentions.

He intends to challenge something so fundamental that the repercussions could be staggering. That’s the kind of chutzpah this guy has.

But, again, there’s a blast radius. For all the determination packed into his hunched, white, brittle body, others around him wind up suffering because of what he does and who he is. This isn’t because he’s frail or dying. In this instance, I’ve abstracted the idea a bit. And the collateral damage this time is a result of things he intends to do, which (now that I think about it) he might not have decided to try—needed to try—if he wasn’t a hunched, white, brittle old man.

Hopefully, you see my point. There’s a compelling angle in writing about a character who suffers from some impairment. You can take the tack where they rise above it—succeed despite the debility. You can show their suffering and pain—both from the disease itself, as well as those who may treat them poorly because of it.

But there’s another angle, I think. It has to do with those around the one who actually has the debility. The loved ones. It’s not about how “put out” they are—unless you’re writing some kind of antagonist. No, it’s about how loved ones often suffer with helplessness, and worry, and anger at an unfeeling universe that is hurting someone they care about. And it could be about how the one with the disease sees his loved ones affected by what he’s going through, and how he responds to that. I think you get the point.

There are, of course, those who stand on the other side. People who don’t care about your character. Maybe it’s your bad guy. And all he sees is a weakness to exploit. In my story I mentioned above, the bad guy does just that, just as he does in Trial of Intentions. And you know, there are real-world corollaries to this. But that’s a whole separate essay, and I’ll leave it for another day.

Right now, today, the point I’m making is that disease and debility aren’t content with trying to ruin the life of the one affected. Each instance wreaks havoc on a whole host of lives. Obviously, those not physically affected experience it differently. And I’m not suggesting it’s the same. But make no mistake, the emotional and psychological fallout for loved ones is real. It doesn’t have to be the focus on your story, but it’s a gap if it’s not there at all.

And oh my lord, the emotional power that’s possible if you dig to the bottom of this stuff and put it honestly on the page.

3 Comments on [GUEST POST] Special Needs in Strange Worlds: Peter Orullian (TRIAL OF INTENTIONS) on Disease and Debility

  1. I can relate to that. One of the protagonists of Synthesis:Weave I based on my partner. The character is a double amputee, but my partner isn’t – he would like to have his legs amputated because of the constant pain he’s in. Despite the pain my partner’s in, he musters up the strength to teach exercise classes to those with MS, but because part of his problem is invisible, people don’t see the strength he has.

    Strangely, because the technology in the book allows the character to bypass his obvious disability, it wasn’t enough to get emotionally engaged about.
    It wasn’t until I made it a little more personal, and added an extra complication (based on another of my partner’s illnesses) that I truly connected with the characters’ relationships. It gave a longer-lasting and potentially insurmountable challenge, and every time I read the parts where it’s mentioned I get choked up. I hope the readers do, too.

  2. Paul Weimer (@PrinceJvstin) // June 2, 2015 at 5:12 am //

    Thank you so much for sharing this. It couldn’t have been easy in the least to share what you and yours have been through, and go through.

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