He Walks Like a Cowboy (and He Writes Like One Too)

[Guest guest]

* Just so we are ALL clear, once again, CMT is NOT A FORM OF MUSCULAR Distrophy*

as this journalist writes. Johah does state CMT " while not an official form of

muscular dystrophy, is put under that umbrella " . MUSCULAR DYSTROPHY IS IT'S OWN

DISEASE, as is CMT. Both are neuromuscular in orgin, but Distrophy and Atropy

are completely different, as we all know.~ ! Gretchen

He Walks Like a Cowboy (and He Writes Like One Too)

Written by Kuebler

http://www.cairnmag.com/Written-Word/Interview-of-Johan-Berger.html

An interview with author Jonah Berger

I meet Jonah Berger at his Cheesman Park apartment where he has prepared a

classic dish: rotini pasta and marinara with quick-bake croissants. He dumps a

mountain of Parmesan onto one of the dishes—more cheese than sauce. More cheese

than any one man could possibly stomach. " Don't worry, " he assures me. " This

one's mine. "

He swaggers out to the living room and drops into his sectional sofa. " Food

first, " he says, " then we'll get down to business. " Jack tunes spill

from his computer speakers as we eat. On the sofa beside him lays a steel-string

guitar. In a seated position, the ankles of Jonah's hard plastic leg braces just

peek out below the cuffs of his jeans.

Jonah lives with a form of muscular dystrophy named for the doctors who first

diagnosed it: Charcot Marie Tooth. CMT has weakened the muscles in Jonah's

extremities, necessitating the leg braces and making finite motor tasks like

shirt buttoning a real headache. Jonah's struggles with and triumphs over CMT

are the subject of his self-published memoir, He Walks Like a Cowboy: One Man's

Journey Through Life With a Disability. It is an unabashed celebration of

leading a challenging but blessed life, written in a raw and rambling prose.

Being self-published suits this man and likely stems from his disability, or,

more accurately, his ability to shine in spite of it. He'll do it himself, thank

you. This displaced lander has long embraced the spirit of the American

West, so it's no wonder he makes his home now in Colorado. And like a true tall

tale hero, Jonah fills up every page of his memoir, from gutter to dog-ear, with

his giant personality.

Kuebler: Is writing a book something you've always wanted to do?

Jonah Berger: This has been a brewing thought, I'd say, just in the past few

years. What has been a longrunning thing is my passion for writing.

I've had four or five people interview me about my disability for grad school

papers. And I found I was using the same examples and the same stories from my

past to answer the questions. I thought to myself: I should write these down.

It took me a year—eight months about. There was very little editing. It was one

of the smoother writing processes I've ever gone through.

Kuebler: Do you mean to say you normally do more editing?

Berger: No. I, to a fault, do no editing. I hate editing. Some would argue,

successfully I'm sure, that I ought to do more editing. But I write when I'm

feeling it. And therefore, if I'm feeling it, what I'm writing is what I'm

feeling. And therefore, to edit it would be to edit my feelings, which seems

silly to me.

Kuebler: Well certainly, had you gone through a publishing house, you would have

had to deal with a lot more of the painful letting go of editorial control.

Berger: No question.

Kuebler: Give us some scoop about your experience with self-publishing.

Berger: There are a couple of companies that provide the service. I sent them

the manuscript. They helped me design the cover and the chapter layouts and make

it look professional. The whole thing, from finishing the book to having the

final copies was about two months.

The challenging side is that they do no marketing, aside from making it

available on Amazon, & Noble and Borders. Which is great. But otherwise,

the publicity is up to you. And trying to communicate with your publisher sucks.

Getting someone on the phone is very difficult. Not like a true publisher who's

getting most of the cut and so they're out there working it and really trying to

sell the book. From what I've been told, the average royalty through a big

publisher is seven to nine percent. I get 25 percent of every book I sell.

Kuebler: Chapter 7 of your book, X-Ray Vision, was recently published in Quest

Magazine, the publication of the Muscular Dystrophy Association. That's quite a

coup.

Berger: Charcot Marie Tooth, while not an official form of muscular dystrophy,

is put under that umbrella. The benefit is that I'm able to reach an even bigger

audience. Quest's readership is 250,000. My book got a write up in their

literary section, and then the chapter was published in the back section called

From Where I Sit.

Kuebler: Chapter 8, The View From My Village, is a compilation of

testimonies—from your mom and dad, your close friends—about how your disability

has affected them. How did you come up with that idea?

Berger: I didn't come up with the idea. I give full credit to my friend Dave

Cowan. When I had finished most of the book, I felt like something was missing.

And Dave and I were having a conversation one night, and he said: What about

getting other people's perceptions of your disability? And the idea was absolute

gold in my opinion. Because, like I say in the intro to that chapter, a

disability affects more than just the person who has it. It affects everyone

around them.

Kuebler: But isn't it a little self-indulgent to publish that? I mean, it's one

thing to inquire. But to go ahead and publish it after you see that it's a

series of blatant tributes to you…

Berger: I am self-indulgent when it comes to this. Because I feel like I was

given a challenge. And in an absolute tooting of my own horn, I have chosen to

not only accept my challenge, but to thrive in the face of it. By that same

logic you could say that the whole book is self-indulgent.

Everyone in the world deserves to have this chapter written about them.

Everyone—and I say this in the book—everyone in this world has special needs.

Either physical, emotional, mental—whatever.

Kuebler: What's next?

Berger: I'm going to write a kid's book—a version of He Walks Like a Cowboy, for

children. My buddy Marc Ronick and I came up with the idea just recently. The

kid will most likely look just like a young Forrest Gump, leg braces and all.

Kuebler: What's with the guitar?

Berger: I have this ongoing belief that the ability to play the guitar has been

in my soul since birth. But by the time I was cool enough to think to pick it

up, the disability had kicked in to the point I couldn't do anything about it.

I bought a guitar anyway. I knew I couldn't play it. I'd tried enough times on

friends' guitars to know that. But I had to have it.

Then this girl walks into my life—a music therapist. And I tell her about a

daydream of mine: A device where I can just push buttons and play the chords.

And she says: That thing exists. She ordered me one the next day.

I'm no Mike , but the other day, for the first time, I learned to pump

out the switchover—you know, the smooth chord change—and for the first time in

my life I really tasted it—what it is to really play guitar. I pictured myself

at a campfire—you know, nothing huge, just 20 people or so. And there I was. I

was playing guitar.