Walking In My Sleep

By Michael C Cooney

In this vivid, intelligent, often comical memoir of finding his way in the world as a boy and young man with Cerebral Palsy, Michael Cooney, founder and president of Exceptional Ability Entertainment, describes his journey to adulthood, and from one coast to the other, as a series of adventures in which he’s sometimes the hero, sometimes the loser, and sometimes a little in between. With a powerful voice and a highly accomplished, gripping style of storytelling, he takes the reader on a voyage involving guitars, radio, rock and roll, love, therapy, surgeries, school, falling, climbing the Statue of Liberty on his hands and knees, learning to tie his shoes at the age of twelve, falling some more, wheeling solo in a wheelchair in city traffic, getting busted by the United States government, almost going to prison, and much more. Along the way are shiny moments of joy, and portraits of the many people who helped him, even when he didn’t want them to. Everyone who has ever felt like an outsider, or “an alien,” as Michael thought of himself as a child, will find a rare kinship in these pages, as well as the warmth, wit, and excellent company of a fellow traveler.

• Language: English
• Publisher: Michael C Cooney
• Release date: Dec 28, 2011
• ISBN: 9781452438832

Michael C Cooney

About Michael C. Cooney Michael C. Cooney is the founder and president of Exceptional Ability Entertainment, a first-of-its-kind, minority-owned, full service production house. We are a diverse team of talented filmmakers. Blending culture and creativity, Exceptional Ability Entertainment utilizes film and music to both entertain and enlighten. We are committed to advancing multicultural ideals, while championing the lives, hopes, dreams, and ABILITIES of those who have been labeled as “different.” We seek to change the world through the power of our voices, and the quality of our product. Let us put our unique creative vision and professionalism to work for you. Join the Revolution! Originally from Boston, he is a graduate of the School of Education at the University of Massachusetts/Amherst, and received his Master of Fine Arts degree in Writing from Otis College of Art and Design, Los Angeles. Before his career in film production, writing, and public speaking, he spent ten years working in all facets of the music industry, as well as mentoring at-risk kids. Having been born with Cerebral Palsy, Michael began his education in a Boston school for the handicapped, but soon became one of the first disabled kids in the United States to break the mainstream barrier. Walking In My Sleep is Michael’s first book. He has also written a wide collection of reviews and commentaries on music, as well as three films: Zombie High, A Place To Call Home, and Accidents, which was co-written with Raymond Martino. In 2010 Michael traveled to South Korea to speak on disability issues. Today Michael continues to speak around the world. He lives in Los Angeles.

Book preview

What others are saying about Walking In My Sleep

Michael Cooney’s writing is colorful, insightful, sweet, knowledgeable, and funny. Walking In My Sleep is full of unstoppable determination, and irresistible humor.

-Musician/Composer Jeff Lass

Walking In My Sleep is witty, emotionally powerful, painfully honest, and dead-pan funny, as it follows the successes and failures of a young disabled man struggling to find his place in an able-bodied world. While the stories are very much about overcoming adversity, at its heart this is a book about human connections, and the strength to be found in accepting yourself for who you truly are.

-Writer/Artist/Actress Mary Woronov

Walking In My Sleep is a compelling look into one man’s struggle to overcome adversity, and live out his dream. Anyone who reads this book will be inspired to explore life’s possibilities.

-Writer/Director Raymond Martino

WALKING IN MY SLEEP

by Michael C. Cooney

TRUE STORIES OF DISABILITIES, INDEPENDENCE,

LOVE, REDEMPTION,

and ROCK AND ROLL

Published by Exceptional Ability Entertainment at Smashwords

Copyright 2011 Michael Cooney

http://www.ablecafe.com

Cover photos by Lindsey Byrnes

http://www.lindseybyrnes.com

Cover design and layout by Seth M. Shulman

For Nina. For Katy. For Flash. For DG. For Ellen. And for my mom.

Come as you are, as you were.

As I want you to be.

Kurt Cobain

Smashwords Edition, License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

Table of Contents

Turn It Up!

Backstage Pass

The Boy Who Fell To Earth

Thank You Donny Osmond

And Then God Gave Us Loud Guitars

The Girl Who Stole My Metallica Albums

Let’s Get Physical

I Fought The Law And

Me And Elvis At The Statue Of Liberty

This Must Be The Place

Here Comes Your Man

About Michael C. Cooney

Acknowledgements

TURN IT UP!

Sixty seconds and we go live on the air.

Yuri’s voice crackled through the tiny speaker on the console. I watched the meters on the main board. Their needles jumped in time with the music. I don’t think I can do this, I said.

Drops of sweat accumulating on my forehead began to run down my cheeks. Yuri, the remote DJ hosting this Fourth of July special broadcast, was live in the town square. The crowd around him had grown larger and louder. Some of them began to chant U-S-A, U-S-A!

He was straining to make his voice heard over the noise. Dude, I can’t hear anything out here. If you want to talk to me you have to use the microphone.

I can’t do this! I shouted. My left leg began to shake. The muscle spasms were coming fast. Within seconds my entire lower body was overcome in a sort of lockdown.

These attacks occurred whenever I became nervous or excited, or often for no reason at all. The spasms were relentless. They had taken control of my body. The shaking grew steadily more intense as the spasms moved in waves up the backs of my legs to my hips.

It felt as if a ferocious storm were raging its way through the muscles of my legs. I couldn’t do anything except close my eyes and wait for it to pass. I clenched my fists and focused all my energy on not falling over.

I need you to get in the van and come back here! I shouted. I’m not going to be able to do this!

I had been working for this progressive-rock radio station in Massachusetts for a year, but this was my first time alone on-air in the studio. It was the most important night of my life.

I had been on the radio in high school and in college, but this was the real thing. The entire station staff had gathered on the Town Common along with nearly two thousand rowdy partygoers. We were about to launch a live broadcast as part of the Fourth of July celebration, and I was on the verge of screwing up the whole thing. For most of my life I had desperately wanted to do something involving music, but my disability always got in the way.

I had wanted to be a guitarist. As far as I was concerned the guitar was the instrument of God. I yearned to play it.

But the reality of my disability stole it from me. Having been born with Cerebral Palsy, I have hands that are too weak to grip a guitar neck. I have fingers that cannot even strum against the strings. Now I was going to fail as a DJ too. My body wouldn’t allow me to do anything.

Cerebral Palsy is a physical and cognitive disability that comes from a lack of oxygen to the brain during birth, or through a brain injury. The severity of the disability depends upon the length of time that oxygen is deprived from the brain, and the parts of the brain that are affected.

In short, if you have Cerebral Palsy, your brain doesn’t work like most people’s.

Basic everyday tasks like finding the milk and eggs in the supermarket, remembering my way home from the store, and even remembering my own telephone number—things that would be simple for the average person—have proven sometimes impossible for me. At the same time, I have always had the ability to see my thoughts transformed into words and sentences, written out in my head, or to hear a rhythmic, musical quality in everything from people’s speech patterns to the way that they walk. These are things I have learned most people can’t do.

Cerebral Palsy affects every muscle in the body. Many with this disability have muscles that are weak and limp. Others, like me, have muscles that are too tight, or spastic. Spasticity affects everything from the ability to stand and walk, to hand-eye coordination, fine motor skills, and the ability to speak. I have had to learn to cope with frequent muscle spasms that cause my body to shake uncontrollably.

Often my emotions are expressed through my muscles. If I am frightened, nervous, or upset, my entire body will involuntarily spasm. It can really hurt. But in a way, I'm lucky. Cerebral Palsy is the only birth-related physical disability that’s neither degenerative nor fatal.

It wouldn't let me be a musician, but it's not getting worse, and it's not about to kill me.

...

I was six when I began to discover the world of radio broadcasting. My mother, a writer, had been invited to read some of her poetry on a non-profit station and she brought me with her.

I didn’t want to go. I was totally not interested in poetry, and more importantly, if I couldn't play guitar, I didn't want anything to do with radio, which to me was a source of music. I had pretty much made up my mind that I didn't want to have a life at all. But my mother, who thought otherwise, dragged me out of the house and threw me in the back of the car.

The guy running the station was fat and he smelled like fried chicken, but I didn’t mind. He let me sit next to him at the controls. While my mother read out loud, I watched him work.

There were albums everywhere. They were arranged alphabetically on tall bookcases against the walls and jammed into large milk crates on the floor. They were stacked high all around me, an endless amount of undiscovered music.

I could barely control myself. I picked up a cardboard sleeve with Bob Dylan on the cover and the DJ scowled. Don’t touch anything, kid.

The chair he gave me had wheels on the bottom. I wanted to make it spin around, but I couldn’t build up enough momentum with my legs. There were three turntables in front of me. I wanted to run my fingers in circles around each one of them. I wanted to lift up the arms and drop the needles on every album in the room one at a time. If I worked here, I could play music all day, for the rest of my life.

When my mother finished her reading, I clapped and shouted, That was good, Mommy!

The DJ sitting next to me grabbed a handful of hair on the top of his head and groaned; we were still on the air.

To my surprise, I was invited to stay at the station for the rest of that day. There were a few restrictions, however. I could sit and watch the DJ, but I had to be absolutely quiet. If at any point I felt the need to spontaneously share my opinion about anything while we were on the air, I was to clamp both my hands over my mouth and keep them there. I would have done anything. Just being in the room made me happy.

I now knew exactly what I wanted to do with my life. It was impossible for me to make music of my own, but I could be a DJ. It was just like playing records at home.

I spent hours listening to the radio, absorbing how the professional DJs talked and presented themselves. I wanted to learn all there was to know about broadcasting. I recorded myself on tape introducing songs and talking about the weather. I even convinced people in my family to be guests on my pretend radio shows.

...

Newton, the city we'd moved to, had launched a job training program with the Boy Scouts of America. It allowed kids in junior high and high school to gain experience in real working environments. One career path offered was in radio broadcasting. My mother had been insisting that I turn off the stereo and get out of the house once in a while, so I signed up. I was in the seventh grade. Radio became my life.

I spent every Tuesday evening of the next six years in a tiny blue house which had been converted to an all news and talk radio station on the AM dial. There I learned the basics of broadcasting. The other kids and I got a chance to practice our microphone skills, and spin records for hours. The station went off the air at 5pm, so we could do whatever we wanted.

Sometimes I was allowed to get behind the turntables and mix dance and funk records. We shook the walls with Run-DMC and Janet Jackson. I felt at home with the DJ's equipment; I belonged there.

At school, I discovered the value of a career in radio. Everybody loves a DJ. The other kids looked at me with envy and respect. Guys who had never spoken to me before suddenly wanted to hang out, and for the first time in my life girls actually started talking to me. On top of all that, my aunt Elysze and Uncle Jay, who lived in Miami, had sent me a limited-edition suede MTV jacket. At the time, MTV was brand new. No one else had a jacket like mine.

I developed an alternate radio persona. His name was Orbit Deen. Orbit was a cowboy rocker from outer space. He had a cool attitude and a perfect body.

...

Yuri was waiting for me. I wasn't in school anymore. I couldn’t pretend anymore. Now, I had to deal with the real world and a body that didn’t work.

When I had started at the radio station as an intern, no one knew what to do with me. I spent most of my time reorganizing dusty piles of albums and old CDs.

When the Program Director asked for a volunteer to remain in the studio and run the board during the Fourth of July broadcast, I begged him to give me the job. Now I was sure that he was regretting his decision. Every time I tried to do something important my body just started spazzing.

The building was dark when I arrived. All the desks were neatly deserted. The coat racks were bare, the offices empty.

I was alone. The main air studio was quiet. The last rays of evening sunlight stretched across the quiet summer sky and streamed into the room through a large picture window in the corner. Stenciled onto the window under the station’s call letters were the words Get Rocked. The studio’s clean white brick walls were covered with framed photos of the many musicians who had stopped by the station over the years. When I entered the room I paused a moment and ran my finger across the autograph at the bottom of each photo.

The radio station was not large, but it went out live over the internet. Thousands of people around the world were listening, and I couldn’t get my body to stop shaking.

The Town Common was forty-five minutes away with no traffic. No one would be able to help me. I was beginning to think that allowing a guy with Cerebral Palsy to control a radio station was a bad idea.

I had been told several times that I would never be able to work in radio. Being a professional DJ is a lot like trying to fly an airplane while simultaneously spinning a basketball on your finger and balancing a dictionary on your head. There are always hundreds of things to be done and they all need to be done quickly.

Coping with my disability often meant that I had to carefully plan and coordinate even the simplest of activities. It was difficult enough for me to handle one task at a time, such as putting on my pants or tying my shoes, never mind having to deal with several at once. The word fast has never really applied to me. According to my mother the only thing I ever did quickly was eat.

I went to college for one reason, to be a DJ. The University of Massachusetts had one of the best campus radio stations in the country and that was where I wanted to be. I started out with a show airing on Sundays from midnight to 2 a.m., and after a few months I was sort of promoted, into the 6 to 10 a.m. slot. I was happy because more people were listening.

The following year, I joined the news staff as a entertainment reporter. This position allowed me to travel around the New England area interviewing local bands, hot new musicians, and a few superstars when they came to town.

It was my dream job. I knew how to ask the right questions, and I always came back with a killer interview. The news director was thrilled with me. As a reward for my work he offered me the most coveted position in the station: anchor of the evening news. I had to accept, but I knew what was going to happen.

Because of CP I’m not very good at reading out loud. In fact I can’t do it all. I tried to explain this to the director, but he just said I was nervous and everything would be fine.

The problem is much more than simple nervousness. As a kid, I had to deal with a horrible stutter. With concentration and a lot of speech therapy I had learned to control it, but whenever I tried to read something out loud my stutter came back. On top of that, I often see words backwards or out of order. My eyes sometimes skip over letters and punctuation. I have been told that this is a form of dyslexia. To me it’s just annoying.

I was strictly a music guy. Everyone liked the music I played on my shows, and I never really had to talk on the air. As a reporter I wrote all my own stories and they were prerecorded. If I made a mistake I could go back and fix it, but reading the news live was different. Somewhere between my eyes, my brain, and my mouth the words were going to get screwed up. Then of course there was my constant trouble with muscle spasms.

Every aspect of my disability was on display when I sat down that night to read the news. The opening theme music played and I started to speak. The first two items on the Associated Press print out were relatively short, one on the Pope and another on the President. I moved through them without much difficulty.

Just as I was beginning to gain a bit of confidence my eyes blurred, and I lost my place on the page. I repeated words and my mouth got caught on letter after letter. My body spasmed and I stopped cold in the middle of a sentence.

Dead air.

I couldn’t go further. The News Director stood there with his mouth open, staring at my body as it shook wildly in the chair. I could see him wondering if I needed medical assistance. He sprang forward. His left hand moved the microphone away from my lips, and his right hand grabbed the papers from mine. He calmly completed the broadcast and signed off.

I’m sorry, I said.

The director started turning bright red. That was the worst--

He stopped himself and took a breath. I’ve never seen anything like that before. Are you okay? He looked at my legs.

Sometimes I can’t really control what my body does, I said. But don't worry. I'm not dying or anything.

I would never be on the air again. Everyone at the station thought that I was going be a star, and it didn’t happen. My heart was broken.

...

I never bothered to mention my college radio experience or the extent of my disability to Yuri or anyone in management. In fact I tried to conceal the effects of my CP as much as possible. I was desperate to be on the radio, so I kept my mouth shut, and now it was happening all over again.

Are you still there? I could hear the growing frustration in Yuri’s voice. I was positive that he wanted to punch me in the face, if he could. Everybody’s getting a little nervous out here! What the hell is going on, dude?

I can’t move! My legs won't stop spazzing out! It’s a Cerebral Palsy thing! I--

Yuri cut me off with a biting, angry tone I'd never heard him use before. I don’t give a damn what the hell it is! Everybody down here is flipping out! If you don’t get your shit together quick I’m going to get fired, and then I’ll have to come to your house, shave your head, and kick your ass!

Every part of the radio station was automated. All the music and commercials were stored on the hard drive of a master computer. This job should have been easy for me. Everything was at my fingertips, and if I had any real trouble the computer would be there to help.

Actually, the station really didn’t need DJs at all. The computer could handle just about everything on its own, but the computer and all the rest wouldn’t matter if I couldn’t move.

The spasms shot through my body over and over again, with power and precision. I clutched the console as if I were holding on for my life. We were twenty seconds away from air time and my body had stopped functioning. The radio station and its entire parent corporation were on the brink of disaster, because of me.

The Promotions Department had been working with local businesses and The Mayor’s office for months planning the Fourth of July celebration. I was sure that my spasms were causing the General Manager to get into his car and drive himself to the emergency room, for the heart failure he was just about to have.

Two giant speakers had been erected on a hill overlooking the common. The fireworks display was going to be mammoth. The station was scheduled to pump out three hours of non-stop rock and roll. It was going to be the biggest Fourth of July party ever. If I didn’t regain control of my body there would be nothing but three hours of dead air.

If I couldn’t do this job I would never be able to face anyone ever again. I would be forced to lock myself in the house and become one of those old men surrounded by a bunch of cats. I was seconds away from realizing a lifelong dream, and it was about to fade away.

Ten seconds! Yuri was shouting again. Come on, Mike, get your headphones on and let’s do this!

I heard the Program Director’s voice. Just tell him to go! Go, dammit!

Okay, I need you to give me a countdown right now! Yuri shouted.

I took a deep breath and placed my fingers on the console. My heart was beating hard as I flipped the master switch from Automated to Manual.

Now I was in control of everything.

The microphone hung waiting in front of my face. I brought it to my mouth, and