The Squeaky Wheel — An Unauthorized Autobiography, is my story of waking from surgery at the age of 24, paralyzed from the neck down.
What if someone walked into surgery and awoke quadriplegic – never having been warned of this risk? What if someone not only survived but also endured the horrors of this disability with hope and humor? What if that someone traveled, worked, entertained, returned to school, earned a masters degree, a law degree and got married? What if someone wrote a funny and tearful book about it? Someone did.
That book is The Squeaky Wheel – an Unauthorized Autobiographyand is the first book to honestly and humorously deal with acquiring a major disability and the profound loss and injustices that accompany paralysis. This book focuses on the author’s accomplishments without straining to pat him on the back. This memoir does not back away from the details of degradation, urine, ignorance and indifference from the unknowing.
The Squeaky Wheel – Excerpt 1
Rainbows — 1999
Rainbows float in bubbles over the heads of the wedding guests and out over the white streaked turquoise ocean, which looks like precious marble. The sea is sky-blue at the next beach — then indigo with Kokohead volcano beyond. The water at each beach in Hawaii is a different shade of blue. Past the guests and bubbles sit two regal Asian women with shoulder length hair wearing white muumuus and playing Elvis’ Can’t Help Falling in Love on the harp and flute. The guests are armed with disposable cameras and bubbles. As the guests arrive a Polaroid is taken of them and the picture glued into a book where guests jot down regards for the betrothed. The table at the entrance to the huge backyard is covered in stuffed bunnies. The preacher beside me wears a polyester pale-blue suit. He is tall, bald and looks like he just stepped out of the Ozarks. He tells those gathered he has been asked to interpret the ceremony using American Sign Language. I see my sister-in-law, Shelli, raise her hands and twist them — American Sign Language for applause. My best-person, my sister Dawn, is beside me. She has prepared a speech. Dawn has Down syndrome. The smell of the lawn, the ocean and plumerias waft past us. Down the grassy aisle march the five cutest little brown girls ever. Each looks like she was drawn for Hallmark. They wear the cutest pink dresses ever. Each carries a large stuffed bunny. Now my bride Amy exits the house wearing a haku lei made by a law school classmate. Amy’s long black hair cascades down the front of her bridal gown. I fight tears. She is a gift from God. The guests stand and smile. In lieu of a bouquet of flowers, Amy carries a pink stuffed pink bunny. It is the year of the rabbit. I wear new black cowboy boots. Actually the boots are entirely made from petroleum products, which makes them synthetic-boy boots. These are complemented by black trousers, a white shirt with Superman cufflinks and a black and blue paisley tuxedo vest. My father has just removed my tres-cool tortoiseshell sunglasses. My red hair shines from under the Chinese bob hat I wear. The hat is a black silk cross between a yarmulke and a Muslim’s hat. My momentarily wife has placed a red circle with the Chinese kanji for happiness on the center of the hat’s band. I’m sure I look like Hop Sing the Chinese cook from Bonanza, but friends tell me I look like the emperor. The only possible thing that can take away from this idyllic picture is the wheelchair under my ass.
The Squeaky Wheel – Excerpt 2
February 2, 1983
“Mr. Shaughnessy?” “Mr. Shaughnessy.” “Why are you waking me?” I ask. It feels as if it has only been moments since the anesthetic took effect and I drifted to sleep. Ninety-nine, 98,97… But that was a long time ago in a reality far, far away. “The surgery is over, Mr. Shaughnessy. Can you tell me your name?” There is a hint in there. “Brian Shaughnessy.” “Do you know where you are?” “I’m at the University of Minnesota Hospital,” I say as I taste… what is that taste? … Lysol. “Okay, very good. Can you tell me the date?” “Feb. 2nd, 1983. Can I have a blanket?” I am freezing. I am certain that they performed the surgery in a meat locker and that I was covered only with frost. The individual asking questions is moving about wearing standard blue hospital scrubs. These are different than the operating room green scrubs. I know this because I once worked at this hospital … in the kitchen. May God forgive me. He is checking my eyes with the flashlight and then dons his stethoscope. First, he listens to my chest and heart; then, as the stethoscope slides below my nipples, the sensation nearly vanishes. I start to look down but immediately feel pain. “You’re lucky you’re inside today; there was a nasty blizzard.” I am not feeling particularly lucky. I am slowly becoming aware of the fact that a group of people cut open the back of my neck, broke off tiny pieces of my spine to access my spinal canal and performed some surgical voodoo in there. Something is terribly wrong. “Breathe deep.” Blue-scrubs commands. He has checked my heart rate, pulse, eyes, etc. Blue-scrubs is around six feet tall and in his mid-twenties, with brown hair, a cropped beard and Buddy Holly glasses. “Can you squeeze my fingers?”
Oh my God! What the hell did these people do? I squeeze his fingers, becoming aware I have 10 percent of the strength I had before going to sleep. I am definitely beginning to wake up. “Is that the best you can do?” What the hell do you think? Wouldn’t I break them right now if you gave me the opportunity? What is going on? “Lift your right leg for me.” Okay now, THIS is big. The anesthesia clouding my thinking is hastily pushed out by the nightmare possibilities consuming every speck of gray matter. I make a Herculean effort to raise my right leg. What a simple request and what tremendous effort to accomplish … nothing. It doesn’t move. I hear my leg hit the bed. What the…? “Very good. Now can you do that with your left leg for me?” “Do what? It didn’t move!” This can’t be real, my mind shrieks, as I make the effort to lower my head and look at my feet, a move that unpleasantly reminds me that knives and other implements have been busy at work for an unknown amount of time. Why can’t I feel my leg move? Jesus. “I didn’t feel my right leg move.” “That’s okay. Try the left leg for me, please.” Oh, well, if you’re going to be polite about it I guess I’ll just do as I am asked and not bother you with my silly concerns. I make the effort again. I hear the thump back on the bed, but I am unaware that my leg moved. With the calmness of a stranger asking my occupation, he asks, “Can you feel my hand on your foot?” “Barely,” I respond, trying not to lose my mind. “Which toe am I touching?” I start to look toward my feet but pain stops me. He continues to check for sensation; it becomes clear that it stops almost completely exactly at my nipples. “What’s going on? What happened? Can I have another blanket?” “I’ll get somebody to bring you another blanket. The doc will be in soon to answer your other questions. He’s talking to your family right now.” My father, brothers and grandmother have waited through the procedure. My mother and two sisters are far away in New Mexico. What the hell is he telling them? I wonder. ’Hi, I’m the doctor that crippled your son, brother, grandson…? The surgery went just fine. You should be able to roll him out of here in a couple of days.’ The only things missing from this nightmare is the obligatory fog in old horror movies. “Can I have another blanket?” I ask this question several times and each time they bring another blanket. The pile of blankets is now thicker than my body. A group of doctors come and perform the same tests Blue-scrubs did. This is intermittently followed by nurses doing the same. No one looks me in the eye. Blue-scrubs says, “Your father and brother want to come in and talk to you. Is that okay?” What will I tell them? “Yes, send them in.” “They can only have a couple minutes.” Fine, I think, since I have no idea what to tell them and what not to tell them. My father and brother enter the room. They are smiling. They know nothing. “Big Red! How are you feeling?” my father asks. My father is a stocky five-foot-eight inches with salt and pepper hair, a gray mustache and the charm of the Irish revealed in his dancing eyes. As is his custom, he wears a suit. My brother has a similar phenotype to mine. He is about five-foot-ten and muscular with red hair and a large neck. “I’m freezing,” I respond. “Have them give me another blanket.” Another blanket is heaped on and I continue to shiver as my dad talks about the blizzard and my brother Dan talks about a basketball game, but none of it makes any sense. I say I’m fine, tired, and sore, while my mind screams, Tell them these bastards crippled me. Tell them to make the doctor guarantee I will walk out of this hospital. Tell them I should have died on the operating table because my life is over. No one — especially not me — can live this way. But I manage to keep silent and a nurse ushers them out. They tell me to get better fast; they will return the next day; and everyone’s real proud and buzz buzz buzz. “We’re going to move you to the intensive care unit, Mr. Shaughnessy.” “This is going to go away, isn’t it?” I ask. “I don’t know,” is the three-syllable answer. “Well, who does know? Where is the doctor?” I ask while thinking, How the hell can you say you don’t know? I know I’m going to walk out of here! I look about the room as carefully as one can when he knows that the slightest movement of his neck will result in ice pick stabs of horrific pain. There are two small beds. I am the only one in the room now although others have come and gone. There are many sets of scrubs in this room and they are all occupied by medical personnel.
The Squeaky Wheel – Excerpt 3
As We Discussed/Disgust
The Doctor walks into the room. He is tall with dark hair only beginning to reveal gray. Aside from being taller, he looks like he could be a younger version of my father. He wears glasses like my father wore for many years. He exudes the status of neurosurgeon as he moves. He sits next to the bed and says, “The surgery was more complicated than anticipated because of unrevealed scar tissue in the spinal canal.” He says the paralysis is probably just “spinal shock” and should go away in a few days. But “AS WE DISCUSSED” there is a possibility I will remain paralyzed. What the hell is he talking about? We never talked about paralysis. He said the surgery might kill me. I’m thinking, somebody better do that if the surgery did not because this is just not tolerable. The intense pain and the shock keep me from arguing with Dr. Liar. Personnel bring a gurney alongside the small bed I am in. It takes some time to remove the blankets before they transfer me. They slide a plastic board underneath me, and as I slip from the bed to the gurney, I see a nearly pencil-wide tube in my dick. I remember one of the people in the operating room telling me he would need to do this for the surgery. I tried to talk him out of it, but he claimed it was needed, and he would do it after I was under. A nasty trick to pull on somebody sleeping. But there it is. I can’t feel it. The doctor lies to me; there is a tube in my dick I can’t feel… what next? I am wheeled from the recovery room to the intensive care unit. As they move me from the gurney to the bed a realization hits. “What time is it?” I blurt out. “11:20 p.m.” Oh my God! This was supposed to be a four-hour surgery, starting at noon, which means my love, Mary, was expecting a call around 4:00 telling her I’m okay. It’s seven plus hours later. I asked my father to make that call. I know that as an attorney he has never returned a phone call in his life! “I need you to make a phone call!” “Okay.” “Please dial 785-8914 and ask for Mary.”
“What do you want me to tell her?” Well, there is the six million dollar question. What do I want a stranger to tell one of the most important people in my life who is certain I’m dead? “Tell her… tell her… I’m fine. Let her know that the surgery took longer than they thought, and I’ll see her tomorrow.” I stare about the room. There are six patients, three on each side of the room. There is a glass enclosure where the nurses remain when not tending to patients. The room is dark; death, pain and profound sadness hang in the air. These blue-scrubbed nurses don’t laugh. The night is endless. A pair of nurses comes around every 15 minutes to check vital signs. I sleep but only because I am full of top shelf painkillers. Every slight movement of my neck triggers intense pain despite more narcotics in me than a 747 has passengers. Periodically I am awakened by the sound of clapping. Someone is cupping his or her hands, which makes the sound hollower… and louder. I look toward the bed next to me where two people are pummeling an obese man in this manner. Why? Why? Why? Aren’t I being tortured enough without this? Cut it out! Stop waking me to this! Every pore of my body cries out, but I am silent. I pray. I tell God I can’t take this. It would have been better had I died on the operating table. The pain is too great and limitations too profound for me or anyone to endure. My Catholic upbringing kicks in as I remember scripture, “Take this cup from me.” I recall what that line did for Jesus and I cry. Two nurses check vital signs and have me squeeze their hands. I do it weakly and the sensation is not “normal.” One of them commands me to lift my leg. I try but it doesn’t move. “Very good.” “It didn’t move!” I insist. “Yes, it did! They both did! Try the left one again.” I try again. I don’t see it moving. “See?” “You didn’t feel that?” “I didn’t feel anything!” I scream, cry. My eyes plead for assurance… a single word of hope. Instead, the two girls giggle… and walk away. I wish I could get up and kill them. The next nurse lingers. “Anything I can do for you?” “This is going to go away, isn’t it?” “I don’t know. They told you this might happen, right?” “Nobody told me anything! I don’t even know what ‘this’ is.”
“When the neurosurgeon explained the surgery to you, he didn’t talk about the possibility of paralysis as a result of surgery to the spine?” she asks incredulously. “No!” “How old are you?” “Twenty-four.” “You didn’t know that surgery in the spinal canal could result in paralysis?” “I’m sorry; I’m a theater major. We don’t know science stuff.” “No, I guess you wouldn’t.” Heavy sigh from her. “That should have all been explained to you, written down on the consent forms and put in your chart. What did the doc tell you?” “‘He said I might DIE, but that that was not likely because of my age and health.” “The surgeon should inform you of ALL risks and this is an obvious one to anyone with a medical background. Let me look at your chart, and I’ll talk to you on the post-op floor, ok?” I never see her again. After a night in the intensive care unit I am moved to the postoperative floor. It is a regular hospital room with two beds. It looks straight down the hallway to the ward I was on before the surgery. I see the doctors and others from that side who were so friendly to me before the surgery. Now they look in and don’t even acknowledge my existence. I wonder what I am going to tell my family. My friends? My mom? Mary. She’ll be here soon… I don’t move my neck because of the profound pain. I watch TV mindlessly as doctors, nurses and med students enter, examine, and speak to and about me in a detached manner as if I am a frog in the pan of a high school lab experiment. Mary arrives. I see her lithe, animated step and smiling face as she approaches the room – singing “Make ‘em Laugh” from Singing in the Rain. Mary loves movie musicals. Singing in the Rain is her favorite. Mary’s hair is almost my color. She is fair, freckled and slight of build. More than once we have been asked if we are brother and sister. I have been told the ultimate form of egotism is to copulate with someone who shares your features. She comes bearing outside food and drink — aware of the heinous reputation of hospital food (food I once prepared — may God have mercy on my wretched soul). Her eyes meet mine and I turn away. She comes to me, setting the food on the hospital table. She sits next to me on the bed.