What Offends This “Disabled” Man

Watching The Great American Read on PBS, and seeing so many of my favorite books profiled, I am reminded why I love to read, and why I love to write.

I have cerebral palsy. And I am legally blind. Fun times! Truly, I choose to see these traits as two factors that add to my life, and not two obstacles that detract from it. You may choose to agree with me… or not. I don’t care. It’s my life, and I’ve learned over many years that, as the great Ricky Nelson once crooned, “You can’t please everyone, so you got to please yourself.”

At a young age, this is the mentality I took into writing. I had two people to please: My elementary school teacher, whoever it happened to be that year, and my Papa Dick. (The identity of the latter never changed.) Beyond that, as long as I was happy with it, any story I wrote was good and useful to teach me more about the mechanics and the craft of writing.

Years passed apace. Much quicker than they appeared to go by as they were unfolding. Those years that seemed to go by me as might a lumbering truck on a logging road–I look back on them now and see race cars in the rear-view. Through these years, I began to write seriously, and with the hope–the faraway wish–that other people might read my words.

I never thought I’d finish a novel. Short stories were easy. You conceived the piece, wrote it, and it was there for you to gaze upon and marvel at within a few days or weeks.

Novels, on the other hand, were an undertaking. What did I have to say that merited such room, such expansion of word counts, such varied language as must be used in a novel to avoid too much repetition? A lack of variety?

I always enjoyed novels. But I could never escape into them as so many of my peers claimed to be able to do. There was something in my head that told me: As much as you want to be a baseball player, you can’t be. You’re Derek. Your legs and your eyes don’t work. Sorry. No fun in the athletic realm for you.

As much as you want to be a super hero, you can barely walk. And you’re reading a book where people fly? Sorry, kid. Not happening.

Mysteries are fun to read, sure. But do you really think you could write one? Mysteries require clues and red herrings and compelling evidence and twists thought up well before they find the page. Your eyes will barely let you watch television. And you would presume to be able to write a mystery on par with the greats? With Doyle and Christie? Not gonna happen.

There was one subject I was steeped in and had researched my whole life. Being a guy with palsy and bad eyes, and wondering why. What if I could write a story about that? Then I could turn my deficits, the things society sees as lacking in me, and make them character traits as opposed to character flaws.

But would anyone care to read such a book?

“You can’t please everyone, so you got to please yourself.”

I’m just gonna write the thing, and we’ll see what happens, I told myself.

Ten years later, my manuscript was ready. I was ready. Time to find an agent who’ll love my book the way I love it; completely and without reservation.

Every writer knows rejection. They know it hurts and it sometimes scars, but it is also an important part of the business of books. When any writer is first writing, as a kid, what matters is the storyMake the story good. By the time they’re an adult writing books for public consumption, what matters is, Will the thing sell?

I remain haunted, after many years, by one particular rejection note concerning my book, What Death Taught Terrence. It is the book I was always meant to write. The main character has palsy and bad eyes, as do I, and he wonders after the purpose of his life. He wonders why.

Rather than a generic form rejection, the kind all writers are used to (“We regret to inform you that we will not be looking to represent your novel. Our opinion is, of course, subjective. Keep searching to find your book’s perfect home. Good luck to you!”) what I got in this particular rejection note was an agent (or an agent’s assistant) who actually sat down and wrote to me, “Clearly, you’ve written this book for people with cerebral palsy.”

You will never find a surer way to offend this disabled man. I don’t remember the name of the person who wrote that note, but I definitely remember the sentiment it carried.

Would anyone ever say to Lee Child, for example, “Jack Reacher is white. Clearly you’ve written this book for white people”? Would they say to the great Mr. King, “You’ve written Misery to scare writers exclusively”? No. But somehow it’s okay to marginalize a book written by a disabled man simply because the person marginalizing it failed to understand it?  That’s how I took that particular incident, anyway.

I would hope our world is better than that.

The world in which I wish to be a published author whose words affect the people who read them–that world is better. And, if it isn’t yet, it will be.

I don’t want to please everyone with my words. But, while pleasing myself with them, Dear Reader, I sincerely hope they will get to you one day and make you question the world we inhabit. And maybe, just maybe, they will make you feel a little bit better and make this life a little bit easier to live.

 

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What Do I Write? (A Prayer For My Book)

What do I write,

Specifically now?

What do I write?

It’s important,

Somehow.

“Would you classify me as “literary”?”

“No, your work is commercial,

And that’s good.”

You have the potential to sell more books

Than a literary writer would.

 

But I don’t write to sell books,

Or even to make bread.

I write books in the hope they’ll be read.

 

I write to say something;

And, if nothing comes, I stay quiet.

You may not understand what I write,

But I stand by it.

 

When the years have stretched

Impossibly out

Into the unknown future,

Let there remain no doubt

That I took the talent given to me

And wrote about a man

Who loved to sail the sea.

I showed people who never knew him

That fame

Isn’t about the world knowing your name.

It’s about cherishing your family.

 

I wrote about the shackles

That rest on my legs

And make painful my nights

And, sometimes,

Wreck my days

Before they begin.

 

I wrote about my eyes,

And how little they see.

And about the looks I get,

The stares I get,

When I’m out to eat,

And how little

The people who look and stare–

How little they see

Of the real me.

 

I wrote about hardship I know well

Because others should know it,

And of it  I’m here to tell.

 

If you don’t know how to take my prose,

How to react to the literature

That out of a life’s experience arose,

That is okay.

Your confusion does not bring me dismay.

What would?

If no one read the pages I grayed.

I can’t tell you

If it’ll change your life,

Or if you’ll hate it.

But the whole of what I wrote

Prays you won’t forsake it.

 

 

 

 

 

 

 

 

On The Doorstep…

I sit here today on the doorstep of my 36th year. That number is a little bit awe-inspiring, a little bit frightening, a little bit exciting, and a lot strange to me. I am the same guy who, as a boy, watched the Mariners triumph over the Yankees in 1995 in the now-imploded Kingdome. Edgar Martinez’s double, featuring Ken Griffey J.r.’s mad dash from first all the way home, and the boy I was using my father’s frame for leverage to leap high in the air as the play unfolded; this scene feels like it might have happened yesterday.

That boy was the same boy who, at twelve, just a year prior to The Double, opined about how much I wanted to be grown-up. I’d do things different if I were a grown-up. Now I look back and think how wonderful twelve felt. Very little pain. No worries. Everyone I love(d) still alive and healthy, and eager to see what I would write next, where I would go next, what I would do with this life of mine.

Thirty-six is an odd age. Life is far from over (knock on wood), but enough of it has accrued behind you to look back on it. In a manner somewhat similar to the plot of my forthcoming novel, What Death Taught Terrence. The how and when of its forthcomingness are as yet unknown, but if anyone would like to fill me in on them I’m all ears!

I’ve heard so many stories of my birth I can practically reconstruct it. The Seattle Supersonics (who are they?) were in the playoffs on my Mom’s hospital-room T.V. She told my dad to turn it off; the stress of the game was giving her contractions. Then I came into the world in a Seattle early-evening on May 11th, 1982. A harrowing birth, to say the least, a doctor who should not have been in his profession, or should have left it many years before, essentially gave me cerebral palsy. Hippocratic oath broken. Harm forever done.

My first solid memory is of my grandfather teaching me a song. Written to the tune of Winter Wonderland, it was really just a verse from a longer barroom ditty:

“Kenbok’s here, can’t ya smeell him. Millie thinks we should expel him. His feet in the air, his butt in the chair, sippin’ on a little glass o’ beer!”

The first song I ever learned. One of the memories I treasure.

The next memory is of my surgery. I go into it in-depth in my book, so I won’t do so here. It’s enough to tell you I found out what pain was that day at four years old, and I’ve never forgotten. The silver lining: Getting to spend many defining days at Disneyland following the surgery and its many yearly follow-up appointments. Mickey Mouse is the man!

The next memory that comes to mind, that I can see so clear in my mind’s eye as to want to jump right back into it, is the first meeting between my best friend, Luke, and me. At eight years old. It started as a not-all-that-fun summer day in a summer daycare that–for an unathletic kid who couldn’t run, couldn’t throw, could barely stand without feeling pain that might bring him down–was something close to torture.

Oh, and no one there would play with me, either.

I literally stood in the middle of the room and said, “Will somebody please play with me?”

“I’ll play with you,” Luke said. Friendship cemented.

Luke liked the Mariners. So I liked the Mariners. He was the first to tell me about the film Field Of Dreams, when we were eleven. I went home and watched that movie eleven times in one night. (It’s a fairly short movie, and I had nothing to do in the weekend-morning, so I could do that.) I traveled with he and his family across the country, watching baseball games as we went, to the Baseball Hall Of Fame And Museum in Cooperstown, New York. We were fifteen and probably didn’t understand the monumental undertaking that planning such a trip was, and without the help of something still in its infancy; the Internet.

At seventeen, I gave a girl my first kiss. She didn’t deserve it.

Yet that short-lived relationship–we were officially together five days, though afterwards she wanted to white-wash it; don’t worry, unnamed person who knows who they are; I wanted to forget it, too–taught me so much. Mainly: Always be yourself. Don’t change for another person, thinking you’re bettering yourself. Change because it works for you, and if the person you’re with loves you, they’ll understand and support you. I never needed to wear a pair of jeans or a trendy pair of shoes to prove to a girl I was worth dating. Can I go back and tell myself that? It’ll save me about a year of needless heartache.

The next memory that comes to mind is of a relationship that lasted much longer–about four years–and which I am grateful for because of what it taught me. But it, too, would never have worked. I see that now. Too many compromises. (Compromises are fine, if both participants in a relationship are willing to give a little; if only one gives and the other takes, that’s not compromise. That’s being taken advantage of.) I still retain love and appreciation for her family, so I won’t give any names or identifying characteristics. I am grateful to know now what not to do later because of what happened between us.

About five years before I entered that doomed relationship, my grandfather, there for me for the first twenty years of my life without fail, succumbed to the lung cancer he’d fought valiantly. I won’t say much about that here. Again, it’s in the book, and hopefully you’ll read about it that way. But that loss, that first he-loves-you-but-he-can’t-come-back-to-you that I’d ever experienced… it changed me forever. I like to think I was already an empathetic person, thanks to my palsy, but watching Papa Dick go increased my empathy quotient ten-fold. Before he went, when it was becoming clear such an exit was imminent, I wrote Papa a collection of poetry, Prose From A Grandson To A Senior Fellow. It was the last book he’d ever read and remains a solid part of the legacy I know I will leave someday.

Truthfully, following Papa’s passing, there was a sizable chunk of time lost to anger. To indifference. To what-will-become-of-me-anyway? But I think I needed that time of reflection. It gave me both the time and the fuel to write my novel. And it let me ruminate on what I wanted out of this life.

I spent a long time as an on-line dater. I was always the one writing the e-mail. And I never mentioned anything about my palsy, or the bad eyes that accompanied it, in my profile. I always gave the women that little nugget to chew on in my second e-mail, if they responded to my first. I met some pretty great people in this way, but I didn’t feel the kind of meshing that told me, This is the one.

Then, about two years ago, an e-mail came in that I’d never forget. She liked my profile. She liked the idea of visiting museums, as did I. She loved Disney, as did/do I, and specifically Disneyland. “I think we could have fun together,” she said in one of the e-mail’s last lines.

We have ever since. I treasure her, and my family loves her, too.

I have no idea where life will take me from here. Well, I have maybe a rough sketch, but that’s all. But whatever happens, however my book gets to you, dear reader, however my career moves forward, I will take on the challenges placed before me knowing that I do so with the support of my loved ones and that, at the end of the day–whatever someone may think of my palsy, my bad eyes, or the way I walk, my family is my safety and my love. I thank all of you who know me personally, because you are that family. Be you a family member or a friend I haven’t talked to in years, you changed me by simply being in my life and coloring it.