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 A Division of Team Diversity Media LLC at Smashwords
Copyright 2011 Michael Cooney
http://www.teamdiversitymedia.com
Cover photos by Lindsey Byrnes
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
And Then God Gave Us Loud Guitars
The Girl Who Stole My Metallica Albums
Me And Elvis At The Statue Of Liberty
“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 tried to ignore the violent spasms coursing through my legs. “Five seconds,” I shouted. “3-2-1! We are on the air!”
There was relief in Yuri’s voice as he welcomed the listeners and started the show. Somewhere in the background, I heard the Program Director thanking God in a low voice.
A surge of strength flowed through my body and the spasms slowly faded away. I had pulled it off. The broadcast was on the air. Our wheels were off the ground, and I was flying the plane.
Yuri and I got into a groove. I played music from the computer and he interviewed random people in the crowd during breaks. The broadcast had been on the air for about an hour and everything was going surprisingly smoothly. We were twenty-five minutes away from fireworks when the studio telephone rang. I thought it might be the Program Director calling to say that I was the best intern he had ever had, so I answered it.
“You guys are doing a great job over there,” said the man on the other end. It sounded like he had been drinking. His voice was raspy and he slurred some of his words. A radio played loudly in the background, and a few people were talking to each other. There was a party going on.
"Thanks,” I said. “Who is this?”
“This is Sam,” said the man. “A bunch of us are down here at the house. We’re having a couple beers and listening to you guys. Just wanted to let you know that you’re doing one hell of a job.“
“That’s cool,” I said. “Who’s there with you?”
“Well, we’re all Vietnam veterans and we get together every year.” He said these words clearly and with pride.
That’s when it hit me. I had known that there might be an immense number of listeners tuning in to the broadcast, but I had never conceived of them as individual people, and I hadn’t expected calls from anyone, least of all a group of half-drunk Vietnam vets.
I asked Sam what years he had served in the war and he told me.
“Did you see combat?”
“Yup. Lots of it.” There was a lift in his voice. “But I made it through, and I came back alive, bro.”
“Thank God for that,” I said.
“Yea, buddy, thank God.”
Sam addressed the others in the room. “Everybody say hey to the kid on the radio.”
There was a burst of intoxicated shouts and cheers. In that moment everything I had been worried about seemed small and unimportant. These guys had gone off to war and risked their lives.
When I was little, a few of my mother’s friends had been drafted and sent to Vietnam. I never knew my father. He left shortly after I was diagnosed with CP.
I suddenly realized that Sam and the others were probably the same age as my father. Under different circumstances any one of them could have been my dad. I felt connected to them, as if I had known them for my whole life.
For a second, Sam wasn’t a stranger. It almost felt as if my dad had called me. “You guys are heroes to me,” I said.
Sam laughed a little. “Thanks for saying that, bro. Hey, can you play a song for us?”
I straightened my back and tried to stand taller. “Absolutely. What do you want to hear?”
“Anything by Mick Jagger,” he said. “And turn it up loud!”
“You got it,” I said.
“We love your station. Keep rockin’, kid!”
The calls came in quickly after that. I could barely keep up. There were military families with sons and daughters serving in foreign countries. One guy had just proposed to his girlfriend, and they called to tell me about it.
I grew stronger, more confident. Each stranger offered words of encouragement and support, and they filled me up. It wasn’t until after the fireworks began that I had a moment to consider Sam’s request for Mick Jagger. I turned things over to Yuri and started searching the hard drive for the perfect Rolling Stones song. When I found one I thought appropriate I loaded it into the computer, and prepared it to play.
Yuri was full of gleeful amazement and joy, as he described the multicolored pyrotechnics bursting in spurts over his head. The studio speakers popped and pulsated. The crowd on the common gasped and screamed in anticipation of each mini explosion.
“Are you getting this in the studio?” Yuri shouted. “Turn up the music! Come on Mike, crank it up!”
I reached for the computer, pushed the “Enter” key, and turned up the volume. The sound of Keith Richards’ electric guitars filled the room.
The opening notes of "Start Me Up" roared above the fireworks. The crowd screamed with euphoric satisfaction. I could feel the drums and bass bounce and reverberate in the pit of my stomach. The control board came alive. Gold and crimson lights danced with every note.
I thought of Sam and all the other listeners who had called. None of them knew I was disabled. It didn't matter that I was. It felt even better than a dream, the type of dream I always have. Like many handicapped people, I can walk in my sleep.
I leaned forward into the console, opened my arms, and let the music wash over me. I wasn't just a guy with Cerebral Palsy. Tonight, I was a rock star.
BACKSTAGE PASS
When I opened my eyes I was face down on the floor. A crowd of strangers hovered over me. I heard them talking. But my breath was short; I could not immediately answer.
A male voice asked repeatedly, “Are you hurt? Are you hurt?” A woman wondered if they should call an ambulance. A teenaged boy standing nearby said, “Is he dead?”
And a second kid asked, “Oh, man, did you see that? He was completely airborne, and then he did a total back flip! It was crazy!”
I had taken another fall. This time, although I was not able to readily recall specific details, it seemed severe. A series of sharp pains began radiating throughout my body, from the center of my chest to my hands and legs. “Can you sit up? Do you need assistance?” said someone.
The last thing I remembered was my head hitting the floor. It took a moment or two for me to recognize where I was: the sports arena, not far from campus.
I tried pushing myself up. A tiny trickle of blood was dripping slowly from my nose, and my limbs felt as if they might simply separate from the rest of my body.
“Come on, I’ll help you,” said a man.
I still couldn’t answer.
Then there was another much louder, more authoritative voice. “He can’t be in here! Take him outside!”
Suddenly it all came back to me. In a rush I remembered the reason for my fall: I was running away from the cops.
Well, sort of. This guy wasn’t exactly a police officer. Without a gun, or even a badge, he was basically just a security guard. And he was considerably younger than me. But he seemed rather pleased with himself. It was clear that he was ready to assert his authority. “That kid cannot be in here!” he said.
It was the middle of winter in western Massachusetts. I was necessarily quite adept at navigating patches of ice and climbing over snow drifts. But I could not out-maneuver a practically pre-pubescent part-time security guard. I found this rather embarrassing.
I had come to the arena as a reporter working for the University of Massachusetts college radio station. My intention was to interview the band performing that night. With their recent string of top 40 hits, best selling albums and successful videos, they were perhaps the most popular high-profile musical act to come into Amherst in years. Everyone wanted to meet them.
I could hardly believe that they had come at all. The general consensus at the radio station was that getting any face to face time would be next to impossible.
I'd arrived at the arena early, feeling single-mindedly determined. But now, given my slightly incapacitated condition, interviewing a rock band didn't seem a top priority. All around me strangers began discussing whether or not I should go to the emergency room.
Generally speaking, whenever a handicapped guy falls down in public, able-bodied people tend to lose their minds. Over the course of my life I have fallen hundreds of times, maybe thousands.
It was difficult to gauge the damage my body had suffered due to this particular fall. Perhaps I had bruised a rib again, or broken another bone. But one thing was for certain: I was never going to the hospital. As a kid, I had already had enough of hospitals and doctors.
...
The sports arena was a fairly new, fully equipped complex, complete with multi-level seating, several snack bars, and even a mobile Subway Restaurant stand. Still standing in front of me, dressed in his official blue and yellow windbreaker, and holding his walkie-talkie, the security guard was firm. “If you don’t have a ticket, you’ve got to leave the building immediately!”
By now, I had managed to roll over onto my back, and sit up. In between gasps for breath, and bouts of intense shooting pains, I attempted to explain that I had come by arrangement to meet the band, and therefore a ticket was not necessary.
But the guard (whose name I later discovered to be Brad) did not yield. “Everybody wants to see those guys!” He held up a laminated ID card, on the end of a cord around his neck. “If you don’t have either a ticket, or a backstage pass like this one, you’re going to have to leave.”
Although he was a rather large human being, his cheeks were still covered with acne. And when he spoke his voice cracked. This position as security guard was probably his very first employment. This was his first opportunity to wield some authority. What did it matter to him that I was on the floor?
The arena was crowded, but this small group of strangers had become particularly fixated on me. A older man with gray hair and glasses stepped forward to address the guard. “What’s wrong with you? Can’t you see that he’s hurt himself? I really don’t think he’s going anywhere right now.”
The two teenagers proceeded to recall exactly what took place prior to my fall. Apparently, in running away from Brad the security guard, I lost control of my walker and stumbled forward. I'd landed with the full weight of my body on top of the walker, then I'd somehow managed to be propelled over it, to slam my head against the floor. The lower bar of my walker was completely bent. Had it not been for the padding of my winter jacket, I would’ve been injured much worse.
Under normal circumstances, I would have executed the correct falling-down procedure, without hurting myself. I knew how to fall. When I was a kid learning to walk on crutches, the very first step was training my body to fall. Karen Thompson, my physical therapist, would instruct me to stand in the middle of a thick red mat. Then she would purposefully knock the crutches away.
At the time, I'd thought this behavior rather evil of her. But Karen Thompson was teaching me the right technique for falling. Whenever I sensed my balance about to leave me, there was a series of very specific motions which needed to be taken.
First I was to throw my crutches as far away as possible, so as to keep myself from landing on top of them. Next, my arms had to be fully extended; both my hands needed to be out firmly, in front of me, in order to catch the weight of body. And most importantly, I'd have to keep my head from hitting the ground.
My initial attempts at falling down were less than successful. I believe I must have slammed into the floor at least 300 times. There were nearly constant bloody noses, black eyes, and bruised cheeks. Still, seemingly without regard for my physical well-being, Karen Thompson literally tripped me, and kept tripping me.
Eventually I learned the correct way to take a fall. Actually, I had become considerably adept at manipulating the direction of my body in mid-air. I could turn my hips just so, allowing me to land on my back instead of my head. Or I could rotate my shoulders, in order to catch myself with my hands. Nine times out of ten I fell exactly right.
And I would’ve done it right this time, had it not been for my general exhaustion, not to mention that fact that someone happened to be chasing me.
And I was a bit more weighted down than usual by the radio station’s recording equipment. I had a tape deck, assorted connection cables, and a microphone, in a carrying case around my neck.
The plan was that we would broadcast some real audio of my interview. So I'd had to be prepared with my gear. But the overall weight of the equipment, combined with the bulkiness of the case, didn’t exactly make walking easier.
That morning when I stopped by the station to pick up the stuff, the engineer kept talking about how sensitive and expensive it was. Then he glared at me, and said, “If you even so much as scratch this equipment, I’m going to pull all your nose hairs out, one at a time.” I’d had the feeling he wasn't joking.
That was why, upon realizing I was about to fall, I failed to follow my learned instincts for self-preservation. I was much more concerned with protecting the tape recorder.
Of course, my extensive efforts in this regard did not mean that I ultimately saved the recorder from being crushed. I landed right on top of the thing. The carrying case became wedged between my chest and the metal leg of my walker.
No wonder I felt as though I may have bruised or broken a rib or two. And when the engineer got a look at his surly mangled recording equipment, he'd probably break the rest of them.
Moving around on crutches or a walker is inherently tricky business, especially the manner in which I did it. Much to the dismay of doctors and medical equipment professionals, I tended to use my walker less like a delicate mode of basic transportation, and more as if it were a skateboard, or a dirt bike. I would regularly attempt to wedge my body and my walker up steep inclines, over curbs, bumps, and cracks in the street, and generally into unnaturally narrow tight places, where I knew it would never actually fit.
I quickly developed a reputation as a bit of a daredevil on my walker. And I had been sternly and repeatedly warned. After one particularly tough spill trying to negotiate a speed bump, a doctor at the emergency room looked at me with concern and said, “Michael, a walker is never supposed to travel in mid air! You’re going to kill yourself!” But that didn’t stop me from walking the way I chose to walk.
Falling on my face was nothing new for me; it was simply part of life. In fact I had become accustomed to regularly injuring myself (sometimes rather severely.) I cannot even begin to calculate the minutes and hours I've spent flat on my face. For the better part of my life gravity has been my enemy. I expend most of my physical energy doing battle with it.
Sitting there on the floor (since I apparently had nothing better to do with my time) I began trying to compose a list of my more memorable trips, stumbles, crashes, and falls, followed by some of the more serious injuries.
In seventh grade I fell at school and hit my head on the base of a radiator. When I stood up again, blood was gushing from my skull. Because my mother happened to be out of the country at the time, it was my aunt Mari who was called to rush in and take me to the emergency room. The wound required ten stitches in the back of my head; I still have the scars.
One snowy winter morning during my freshman year in high school I slipped on a patch of ice and landed chest first against a lead pipe protruding from a nearby brick wall. With this particular fall I sustained a dislocated ring finger on my right hand, and two bruised ribs.
Actually, I had bruised my ribs several times. During a trip to Washington, DC I fell down a few steps in front of The J. Edgar Hoover FBI Building. Not only did I bruise a rib, I broke my right wrist. At the age of five I fell down the stairs leading to our basement, knocking myself unconscious for nearly a minute.
More recently, I slipped across the wet floor of my just-washed bathroom, hitting the back of my head against the toilet. This stumble resulted again in bruised ribs, along with a severely bruised spine, and a partially collapsed lung.
But after every one of these falls I was usually able to get right back up. My body is not unlike that of an athlete, but not because of strength, conditioning, or physical prowess. It's because, like an athlete’s body, mine has been repeatedly battered, bruised, and broken. I anticipate, even expect, a certain amount of daily soreness and pain. But I always have felt it's worth it. It’s the price for being up on my feet, and not in a wheelchair.
Doctors and physical therapists had been trying to get me into a wheelchair for years. I've always refused. At some point later in life, I will not have the choice. It's going to happen to me someday that a wheelchair is necessary. I'm determined to remain upright, walking and running, for as long as possible.
But falling down wasn't always a negative thing. In junior high I learned how to use it to my advantage. If there was a girl I found attractive, and I wanted to meet her, I would position myself directly in front of her, then pretend to fall down. This was a sure fire method to get large amounts of sympathy and attention. The only problem with my plan was that, if the object of my attraction happened to not find me particularly appealing, she would often just step over my fallen body without a second thought.
My most famous fall happened when I was about eleven years old. At the time I attended a Boston area after-school program for the physically and mentally disabled. As a fundraiser, the directors of the program had organized a kickball game against former players of the Boston Bruins hockey team. There was Gerry Cheevers, Phil Esposito, and my all time favorite player, Bobby Orr.
I had just discovered the thrills of ice hockey. I loved watching Bruins games with my uncle Jimmy, and a month and a half before the kick ball game was scheduled, Mike Eruzione came to the after school program to talk about winning the gold medal in the Olympics.
I got to shake his hand. After sitting in front of him, listening to his stories, I was overwhelmed, nearly to the point of tears. For the first time I felt proud to be an American. During his presentation, Mike Eruzione looked directly at me and said, “Remember, in life anything is possible!”
Then only weeks later, the chance came to meet Bobby Orr. It was beyond anything I could have imagined. Several posters of him hung in my bedroom. And my uncle owned a record album about his life and career. I think it was called something like The Legend Of Bobby Orr. Jimmy and I listened to it over and over.
The kick ball game was held under the lights at a local baseball field. And it was without a doubt the most thrilling night of my life to that point.
Just prior to the start of play was when I met him. He looked me in the eye, shook my hand, and then we snapped a photo together. Throughout the entire experience I don’t recall ever being able to say a word. I only gazed up at him with sheer admiration.
The famous fall occurred on the field. Roughly halfway through the game I was at the plate. I hit the ball as hard as I could with one of my crutches, and I started running. One of the fielders intentionally bobbled the ball, and everyone was shouting for me to run faster. So, after reaching first base I kept moving as fast as I could. Then somewhere between first and second base I slipped on what might have been a loose piece of dirt, or a rock. I stumbled, and fell down.
The whole park was suddenly silent. As luck would have it, the first person to reach me was Bobby Orr. He came rushing over from his position at third base. Seemingly in one motion he scooped me up to my feet, and brushed me off.
After a moment I was again standing on my crutches. With the exception of two skinned knees and a tiny cut below my bottom lip everything was fine.
And that’s when it happened. Bobby Orr looked at me, gently patted the back of my head, smiled and said, “He’ll be all right! He’s tough! Mike is a hockey player!”
It took another second or two for me to realize exactly what was going on. Bobby Orr, the single greatest player of all time (in my estimation) had just referred to me as tough. There could’ve been no better compliment in the universe. From that moment on I did my best to live up to the label. I felt tough. I worked hard to be tough.
And whenever I fell down, no matter the bumps, bruises, or the blood I always came right back up. Because in my head, and in my heart, I was a hockey player.
...
But this time things felt different. I wasn't a little kid. My whole body ached. And I couldn’t move. I had come to the arena because I wanted to be a radio journalist, and get an interview no one thought I'd be able to get, and I'd ended up sprawled out in the middle of the floor. Could my life be any more embarrassing?
At least the small crowd around me began to disburse. But Brad the security guard was still standing with arms crossed, watching intently. “I’m from the UMass radio station,” I said. “I am supposed to interview the band! Just ask Bethany!”
Bethany was a bubbly blond girl who was allegedly in charge of this event. Earlier that morning she met me just inside the front door of the arena. All of her special badges, official patches, and backstage passes were prominently on display around her neck. If anyone could get me five minutes with the band it would be Bethany. I'd explained who I was and why I had come. Then she smiled, tilted her head to one side, and said, “Okay sure, cool beans! You stay right here, and I’ll work something out! Okay, I’ll be right back!”
I had just been granted the post of entertainment reporter at the radio station. And it was not an easy assignment to get. In fact at first the station’s news director, an extremely large former military officer, did not even want me. The last guy who had worked under his tutorage was now living in New York City, employed by major television station. And the news director questioned if I were up to the rigors of the job.
My initial pleas for the position went unnoticed. It was not until I actually practically got down on my hands and knees, begging him for just one opportunity, that he finally relented.
This was my chance. It was a crucial moment, my very first real interview. I had set out to prove myself. It seemed all I'd proven was that I could fall.
But I thought, tough. I stared hard up at Brad the security guard, and told him, “If you want me out of here, you’re going to have to get a real cop to carry me out! Because I have a job to do! And I’m not leaving!”
I'd done so much work on this event. Two to three weeks prior to the show it seemed that I had worked the phones correctly. After a series of calls to the band’s record label, their management, and publicists, I was officially given the green light.
But at eight fifteen that morning I was awoken by a telephone call from a publicist, who'd said, “I’m sorry, Mike, but the band has decided that they are doing no further scheduled interviews before tonight’s performance.”
I felt angry, frustrated, and a little betrayed. But I didn’t give up. Following a sensible, hearty breakfast of coffee and Chips Ahoy cookies, I'd decided to make my way down to the arena. If I was to be denied an interview, someone would have to tell me to my face.
And after my brief but cheerful exchange with the woman in charge I assumed everything was on the right track. Bethany was working stuff out. This interview was going to happen. She had instructed me to remain in that same spot, and wait for her. That's what I'd been doing.
I stood waiting for ten minutes, twenty minutes, an hour, two hours, and still Bethany never returned. I noticed her several times rushing past, with another reporter or photographer in tow. I shouted to her, asking if I might have just five minutes with the band's lead singer. But there always seemed to be a different excuse about why I could not see him—he was in the middle of eating a meal, or it was time for the sound check.
With each instance Bethany seemed more surprised to find me still there. “Oh, are you still here? Sorry, um, I forgot. I’ll be right back.”
And still I waited.
Two hours became three, then four and five. I watched people coming in and out, as the arena slowly filled. There were no chairs or restrooms nearby. I simply stood there on my walker with all that stuff around my neck.
...
The sky slowly grew darker; then the sun had set. Inside the arena they switched on the bright overhead lights. After several hours of standing in the same spot, my feet gradually fell asleep. My hands were numb from gripping the walker. My body had basically become frozen in place. If I lowered myself down to sit on the floor, chances were high that I might never be able to stand up again. I watched strangers come and go, milling about. But I couldn’t give up.
At around three or four o’clock that afternoon, the street team from our local modern rock radio station arrived. It was their job to set up a table at public events in order to represent the station, giving away things like bumper stickers and t-shirts. And they had some sort of raffle going on. Two girls seated themselves at the table, one of whom looked particularly interesting to me. By this point I could barely move at all. My joints burned. It was as if I had no feet. And the muscle spasms in my legs had been raging for roughly an hour. But still I managed to limp over and say hello.
The young woman’s name was Hailey. I extended my hand, smiling and introducing myself.
Hailey smirked. “I know who you are, Michael. You asked me out last week, and I said no. Don’t you remember?”
The other girl sitting next to her let out a little chuckle.
Despite being so blatantly shot down (for a second time) I remained there, in the vicinity of Hailey’s table, mostly because there was nowhere else for me to go. I was in the midst of relating the terribly trying tale of my day, when I heard a deep, booming, familiar voice. “What’s going on here?”
I turned to find a tall, distinguished-looking man with glasses and slightly graying temples. He was wearing motorcycle boots, jeans, and a sleek black leather jacket. I had never seen his face before. But I immediately recognized his voice.
“This is Mike,” Hailey began. She was about to say the man’s name. But I stopped her. “Oh, I know who he is!” I said.
This disc jockey’s voice had been a fixture of New England radio for decades. I grew up with him. He was a legend.
“Wow! I’ve been listening to you since I was a kid little!” It took a moment for me to realize the utter stupidity of what I had just said.
The local-legend DJ forced a smile, and he slowly shook my hand. “Thanks a lot kid, I guess."
Before I could apologize for being such an unbelievable idiot, Hailey jumped up from her seat. “Michael’s been here for the last six hours!” she said. “He was told that he could interview the band. And then they blew him off!”
The DJ’s eyes opened wide with surprise. “That’s incredible! Are you okay?”
I must have looked more than bit worn out. And although his question was largely rhetorical, I answered with a little too much candor. “I’m totally starving, my whole body hurts, and I’ve really got to use the bathroom.”
The legendary DJ seemed unsure how to react. I couldn’t stop myself from talking. “That girl Bethany told me to stay right here. And that’s what I’ve been doing. I need that interview. I’ve got to get it!”
The DJ placed his hand on my shoulder. I allowed my weight to lean into him. “Mike, I’m sorry to tell you this, but we already did the interviews with the band. The interviews were over like three hours ago.”
My body involuntarily slumped forward in defeat. I could not believe it. After six hours of waiting, standing in the exact same spot, there would be no interview.
“Stuff like this needs to be set up way in advance,” said the DJ. “We arranged our interview like almost a year ago.”
Bethany had lied to me. I had endured hunger, exhaustion, and moments of nearly unbearable physical pain. And now after all of it, I was going walk away empty-handed. There would never be another assignment at the radio station. Everyone would laugh at me. I was a complete failure as a human being.
I began to contemplate throwing myself under a bus when Hailey spoke again. “Can’t you do anything? I mean, look at him he’s pitiful!”
The DJ stared a moment, and I attempted to present myself as pitifully as possible. A backstage pass was hanging from around his neck, and for a moment I had the fantasy of grabbing it and running as fast as I could. But of course, I was in no condition to run anywhere. And even if I were operating at full strength the DJ would have no trouble catching me. People with Cerebral Palsy pretty much know that they're always going to be caught.
“Okay,” he said, patting me on the back, “let me go see if I can talk to someone for you.”
I could hardly contain myself. I thanked him over and over. “I’m ready to do the interview right now,” I said. “All I need is five minutes with the lead singer!”
Then the legendary DJ disappeared somewhere. I returned to watching, and waiting.
But this time I was more proactive. From my spot next to Hailey’s table I stopped whomever passed by. There were official-looking individuals with badges, name tags, or buttons. There were strangers and entire families. I stopped them all, and explained my dilemma. The effort to get me an interview quickly grew into a word-of-mouth grass-roots campaign.
And it seemed to be succeeding. By sundown, I was sort of a celebrity. Everyone I spoke to had pledged their support in pursuit of my goal. People became concerned with my well being. They offered me food and drink, and they lobbied on my behalf. I was beginning to think that perhaps everything was going to work out after all.
Then Brad the security guard arrived to expel me.
It was 7pm, one hour before show time. Everyone had filed to their seats. The lobby was nearly deserted. The only people left behind were snack bar vendors with their red aprons and paper hats, and Hailey with the radio station people. No Bethany, no legendary DJ, no anyone else. I had been forgotten.
“Come on, let’s go!” said Brad. He stared at me with a look of satisfaction, as if he had just won some sort of battle between us. “No backstage pass means you got to get out!”
Now, I was still on the floor. And he was still standing over me, playing the part of a cop.
I felt like a fool. And the worst part was that I hadn’t used the bathroom all day. This proved to be my greatest mistake. Because of CP I have almost always encountered difficulties in the area of bladder control. If I am not diligently aware of it, my bladder will on occasion simply spaz out just like all my other muscles.
Unfortunately, following my collision with the floor, I noted that the front of my pants seemed to be more than a bit damp. Somewhere in mid-fall, my bladder had given way. Normally, I would have thought of this as a big deal.
“Okay kid, that’s it! Get up! If you don’t have a ticket, you’ve got to get out now!”
I finally managed to pull myself to my feet. I steadied myself on my walker, and adjusted the case of recording equipment around my neck. My knees felt weak, and my legs were still shaking. I surveyed the lobby one last time. Brad began leading me in the direction the door.
Then just as I was about to step outside the building, a large, round man suddenly called out my name. “Michael Cooney! Are you Michael Cooney?”
This portly fellow seemed to appear out of nowhere. He was rushing toward me, his face flushed, his breathing labored. It was fairly obvious that life rarely required him to move quite this fast.
“Are you Michael?” he asked again, gasping.
"Yes! That’s me!” I said, attempting to straighten my back. His name was Al. He was wearing a black baseball jacket with white leather sleeves. Stitched into the back of the jacket was the multi-colored logo of one of the world’s largest record companies.
“You’re the interviewer from the college, right?” he said. “I’m here to invite you back to meet the band!”
For a moment I stood very still, staring at this middle-aged man with his red cheeks and slightly receding hairline. I had to be sure that he was real, and not just a figment of my over-tired imagination.
In my best radio journalist voice I said, “I accept your invitation. Thank you very much.”
“Oh, you’ll need one of these,” he said. And with that, the man from the record company presented me with the highly coveted, laminated piece of plastic dangling from the end of a thin blue cord. Written in large red letters across the yellow plastic card were the words, “Backstage Pass.”
Hanging there it seemed to dance for a moment in the light. This was the key to my success. I slowly lowered my head as Al draped the cord around my neck. In my head I heard a fanfare of trumpets. It was as if he were knighting me.
I turned my body again toward Brad, the security guard. He seemed a great deal more humble. Respectfully, firmly, I held the pass up in front of him.
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