Waking

by Matthew Sanford

  I am no longer listening. My mom looks frozen—legs crossed, smile pasted on, and breathless. I know this look. She has hit a wall; her lack of movement and smiling politeness betray that she is frantic. This is not the life she wants for her youngest son. I, on the other hand, am looking for a way to break the drone of what we have heard, for a way to bring movement back to my mom’s eyes. As Dr. Goff finishes up, I ask through a playful smile, “So what’s the good news?” The surprised look on his face and rush to answer mean that he thinks I actually want an answer.

  “Well, Matt … if you follow the programs of maintenance we have taught you, if you are vigilant about your health and upkeep, you can expect a relatively normal life.”

  Yippee.

  The disintegration of body. We are all living a death sentence of sorts, and it is delivered to us through the disintegration of our bodies. In some ways, I was lucky to be exposed to this truth so early. If the arc of life is drawn as a bell curve, then at thirteen I received this news on the upslope. So much lay before me—the natural momentum of my life force was still strongly forward. This was not a decision that required effort. It was an energetic fact.

  Seeking begins when the options presented are unacceptable. The path before me included a troubled mind-body relationship and dwindling prospects of health. At thirteen, these truths were not obstacles to confront. They were part of the air that I was breathing. If I was going to live, I needed to live the mind-body relationship my life had dealt me. My arm strength didn’t have to overcome it. Unfortunately, this would take years for me to realize.

  Even now, I can still hear myself answering my father during that summer between third and fourth grades. Can I control accidents … the course of my life … my disintegration? Not exactly, but I can live the experience I actually have. Seeking means believing in one’s experience. I think he would have liked this answer.

  What this implies for my experience of rehabilitation is something else again.

  10

  Broken Again

  Imagine walking from a well-lit room into a dark one. Imagine the darkness as a visual expression of silence. My rehabilitation made a mistake with the silence by focusing on the absence of light. It too quickly accepted the loss and taught me to willfully strike out against the darkness. It told me to move faster rather than slower, push harder rather than softer. It guided me to compensate for what I could not see.

  Another course of action, however, is patience. Stop moving, wait for the eyes to adjust, allow for stillness, and then see what’s possible. Although full-fledged vision does not return, usually there is enough light to find one’s way across the room. After a while, the moon may come out, sounds might gain texture, and the world might reveal itself once again, only darker.

  I was convinced to accept a complete loss of light. First, the doctors replaced the flesh and bones of my legs and feet with stories of phantoms and ghosts. Next, the physical therapists guided me to believe that the only meaningful connection to my paralyzed body was through a regenerating spinal cord. Against this backdrop, compensation was offered. My arms and my wheels, fueled by a compensating will, were to carry me through my life. My efforts would aim to prove that the room’s darkness didn’t matter at all. I would overcome it and become as effective as if the light were still on.

  But what if I really wanted to be whole? If I wanted to work with the darkness rather than against it? Such questions were beyond the range of my rehabilitation. My initial attempts to feel my whole body were seen as an impossible hope to walk again. The only other option presented to me was total darkness—my paralyzed body as lost. This was the mistake. When silence is perceived strictly as loss, it can become deadening, even self-destructive. In my case, my paralyzed body became a static weight, an antithesis to living presence.

  This view of silence lends itself to a familiar story. We love the notion of overcoming adversity, of succeeding in the face of imminent and probable failure. Short of that, we admire those who refuse to fall without a fight. We are a willful culture and define our heroes accordingly. We strive for victory over the darkness of the room.

  But what if the darkness (the silence) is a fundamental part of us, of our consciousness? How do we overcome an essential aspect of what we are? For me, as we shall see, working against the silence deadened my sense of living and accelerated a negative sense of death.

  Eventually, I reached a boiling point. But the lucky frog in me refused to trade my lower body for the speed of will and wheels. When I resisted this particular healing story, when I instead actively explored the silence, a different world appeared, one with greater depth and potential.

  My first day home from the hospital is the first day of June 1979, some six months after the accident. Although I will continue physical therapy as an outpatient through the fall, it feels good to be home. I will be living in our sunroom.

  The space is ten feet by ten feet, with windows all around and a dark stone floor. While I was growing up, the sunroom offered me my first measure of independence during my Saturday morning ritual. I would wake up, grab a quilt, get a bowl of Cap’n Crunch, and buckle in for a journey through cartoon heaven—Pink Panther, Scooby-Doo, Looney Tunes, and, of course, Jonny Quest. The entrance to this room, about seven feet wide, served as the goal crease for Nerf hockey, the goal line for “goal-line stand” football, and generally a boundary between imagined worlds.

  Now it is the opening to both my bedroom and my bathroom. My bed is against the wall where our black-and-white TV was—my dad had refused to follow our culture into color—and a commode is wheeled in when I need to empty my bowels. The shower is upstairs, and my brother is the designated courier of my body. He is eighteen and working summer nights at a grocery distribution warehouse until four in the morning. My mom rustles him out of bed at nine, and in an exhausted trance, he carries me up the winding stairs, sets me on a chair, turns on the shower, and collapses back into bed, only to reverse the process in fifteen minutes. I try not to shower very often.

  By mid-August, an addition to our house will be complete. We are converting our garage into a bedroom, adding a bathroom with a wheel-in shower, a side entryway, and a new, two-car garage. I will have what feels like my own wing of the house.

  For the next year, my mother and brother fight like cats and dogs. Each wants what the other cannot give. My mom wants another adult, someone to share responsibilities, decisions, concerns—some level of companionship in what is now a makeshift family. My brother is ready to break away. He aches for a normal transition away from parental control and into independence. Just last summer, he was traveling across Europe with his intensive history and literature class. He drank his first hard cider, had a hot romance with a girl abroad, and came back on top of the world. Upon his return, our family, minus Laura, met him in New York and toured prospective colleges: Harvard, Yale, Princeton, Dartmouth, Brown, the University of Michigan, and Northwestern. As a top student, James could have gone wherever he pleased.

  But now, my mom is insisting that he go to school in Duluth. “We need to stick together right now. Too much has happened.” Frankly, I am relieved. Not having my brother around is unimaginable. He also knows this, knows that his obligation is to us. But this means he must stand by and watch as his life continues to break. Like all of us, he is trying to heal, searching for continuity, a way to recognize and connect who he was before the accident with who he is after. On each day that he goes to the wrong school, he is made to look squarely into the face of his damaged life. Thwarted, frustrated, and angry, he grinds through his first year at the University of Minnesota in Duluth. He and my mom will compromise. James will transfer to the University of Minnesota, Twin Cities, the following year; 150 miles seems like a manageable distance for our family to absorb.

  Still, my mother and brother continue to fight. My brother needs attention, some sort of acknowledgment that he too has suffered. People can more readily relate to a mother who has lost her husband a
nd firstborn child; and they can plainly see my physical damage. Not so the ruptured world of the older, walking brother. When he reaches out to our mom, he sees only that she is consumed with helping me. In some ways, he is still alone in our house and we are still in Rochester. He develops a do-it-on-his-own streak and is willful enough to carry himself forward. He moves through college and law school and successfully builds his own law firm. But the cost has been high. He too has poured much of his hurt into the silence.

  My mom settles into a widow’s life. In the first few years, she gets her master’s in art and has multiple marriage proposals. Twice she gets pretty serious, only to find the suitors lacking. When I ask her for her thoughts in retrospect, she says, “They just weren’t interesting enough. Your father so fascinated me.” The result is a woman who lives with three animals, continues to paint, loves her people, and quietly reads while listening to classical music.

  Through it all, we remain a close-knit family. Never quite getting what we want from each other, we continue to eat food around tables, are deeply committed to each other’s well-being, and have a tendency to dwell on the past. We don’t fixate on the good ole days before the accident, but rather speculate about the relationships we don’t get to have, about the mystery of what becomes of people who have died. We are still processing twenty-five years later. I imagine we always will.

  I returned to Ordean Junior High School during that same year, in September 1979, more than nine months after the car accident. I was passed on to eighth grade even though I had missed three-quarters of seventh grade. I needed to stay with my friends, and the school district reluctantly agreed. I was a smart kid and could make up for lost time. It wasn’t quite that easy. Six months of school is a lot to miss—it took about a year for me to truly catch up.

  I had the most amazing friends—Roger, Mark, Tom, John, Sheila, Annelise, Kerri, and others. We picked up right where we left off. Yes, things were different. Yes, I rolled to destinations rather than walked, and peed into a bag attached to my leg rather than into a toilet, but my friends took me everywhere. We traveled in a pack, my friends taking turns pushing me up the steep hills of Duluth and then fighting to catch a ride standing on the back of my wheelchair while rolling down them. We went to movies, listened to music, talked, and had water fights. Girls sat on my lap, and girls and boys even kissed each other on occasion.

  With a web of close friends, returning to the social side of school was easier than I expected. I had two advantages. My disability did not disfigure me. At first glance, I looked like an average kid who just happened to be sitting in a wheelchair. This made my reimmersion into the greater student population much easier. Besides bumping into the heels of kids standing in the hallways, I wasn’t scary. For the most part, I didn’t make people feel uncomfortable.

  The other advantage I had was a celebrity status of sorts. Although I was in seventh grade for less than three months, I had made a lot of friends. I had also been elected to the student council and had been the only seventh grader on both the varsity softball and basketball teams. My peers were ready and waiting for the return of the kid who was in that “terrible car accident.”

  Returning to the physical side of school was not so easy. My school was on three floors, and there was no elevator. My wheelchair and I would get tipped back into a wheelie and bumped up or down a flight of stairs one step at a time. Two of my friends—Roger and John—took turns between classes teaming with a female aid to perform the lifting duties. Ironically, both my junior and senior high schools got elevators within the first few years after I left.

  In the classroom, it didn’t get much better. None of the combination chair/desks worked for a kid in a wheelchair. The school administration found two desks that I could wheel under and have a writing surface. I picked the two classes in which I needed them the most—algebra and English. Situated in the front corner of each room, I sat behind my special desk and tried not to feel conspicuous. In the other classes, I wrote on my lap.

  The bathrooms were not at all wheelchair accessible. This just compounded my most stressful problem—managing my bladder and bowels. I was still new at being a paraplegic and had not found my body’s new rhythm. (I eventually got better at this, but it took a couple of years.) The painful consequence was accidents—a lot of them. Any day, at any time, I might look down and see a big wet spot between my legs or, worse yet, realize that I had involuntarily emptied my bowels. These accidents were so frequent that my mom had to be on call. I would track her down, wherever she was, and this was a time before pagers or cell phones. She would come get me, take me home, help me clean up, redress, and then take me back to school. There were some days when I couldn’t find her right away, days when I would keep going to classes, pretending not to have the problem. Some of these days were as painful as any day I had in intensive care … just different.

  I even had a bowel accident on the day that I gave a big speech in front of the whole school. I was running for student council president and wearing new, white pants and my dad’s red V-neck sweater. It happened in the morning, and I had just enough time to make it home, clean up, put my clothes through the washer and dryer, make it back to school, and deliver my speech. The good news is that I made it in time and won the election. I was elected student council president at the end of eighth grade for the following year.

  The painful side of returning to school was one that I kept away from my friends. They just saw the red sweater, white pants, and my smiling face.

  The thud of the rock that nearly breaks me comes on November 16, just over two months into eighth grade. After nearly a year, I finally finished outpatient physical therapy yesterday. I am still hit-or-miss on transferring up from the floor, but I have mastered wheelies and going up small curbs and bumping my butt up a few stairs while sitting out of my wheelchair. Now, on Tuesdays and Thursdays, I can go home after school, just like any other kid.

  It is Friday. Another week of school has ended and the excitement of the forthcoming weekend is knocking at the door. My brother and I are hanging out together. Since the addition to the house was completed, we are sharing a bedroom again. We are beginning to feel like fun-loving brothers again.

  I am between our twin beds, my chair facing the headboards. While passing by, James begins to tickle me from behind under my arms. I am leaning forward, my torso pressing against the top of my thighs. I am giggling uncontrollably. Something happens, a spasm, something. My chair tips forward, and I am on my way down. I tuck my chin—what I was taught to do, but only if I was falling backward. As I tumble forward, my head hits awkwardly against the floor. I am lying on my side and stomach, my cheek pressing against the tan carpet. My arms are somehow caught underneath me; I can see only my right hand. I try to sit up by pushing my arms against the floor. Nothing. I look at my hand. It is twitching, opening and closing slightly. It is not my hand. It has become an object.

  “James, call a doctor,” my carpet-muffled voice squeaks out.

  “What?”

  “Call a doctor,” I moan.

  “Quit kidding around. It’s not funny.”

  “James, I can’t move my arms … something terrible has happened … I can’t feel anything.” My vision dims; sounds grow faint; my eyes close. Time is changing shape.

  “You better not be kidding.”

  “James …” I break into sobs.

  “Holy shit, holy shit. What should I do?” He is not asking; he is taking charge. He is being my older brother. He looks down at me folded on myself. Still in disbelief, he says, “Matt, I am going to pick you up … ready?” At this moment, I am paralyzed from the neck down; there is no way to object.

  “James, be careful … it’s my neck.” He lifts my head and places it in the crook of his arm and begins to lift. Colors blur out the corners of my eyes. I am falling, dropping. There is nothing, no floor, no bottom, no base, a disorienting gap between my head and my body. I know this drop down a canyon; the last time, it was accompan
ied by plaster and metal racks and body casts. For an instant, I am dying once again. “My neck …” He lays me gingerly on the bed. I feel a load of bricks hitting concrete. “The pillow, move the pillow,” I squeal. He sets my unfelt arms across my chest and rushes to the phone in the kitchen. Somehow, he tracks down Dr. Van Pufflen. An ambulance is called. We will meet him in the emergency room.

  As I lie there, waiting for the ambulance, I feel crooked, not on the outside but on the inside. The ceiling looks so clean; my eyes feel so light. Something is twisted or bent or wedged on the right side of my neck. I can feel the pressure. I am barely maintaining against a tidal rush of fear. I can see my brother at the very left edge of my field of vision. James is sitting on the bed, feet on the floor. His elbows are pressed into his thighs, his forehead into his hands. He is staring downward. He is lost.

  As time stretches into silence, we wait for the siren. In a moment of calm and dread, sensation resurfaces—burning pinpricks throughout my upper body, even my fingers. “James, I can feel stuff again.” I wonder if he knows this is a good sign.