The third role model takes the medical model’s healing vision a step deeper. Steve is the older brother of Sheila, my junior high school crush. She ends up being my girlfriend for much of the eighth and ninth grades. Steve is famous within the Duluth rehab community. He was injured when he was sixteen, while swimming in the nearby Lester River. As I understand it, his buddy jumped off a bridge and landed on Steve’s back. He too is injured at about the fourth thoracic vertebra. Quite an athlete and swimmer before his accident, Steve excelled afterward, winning multiple gold medals at the worldwide Paralympics.
I too am quite an athlete. The feeling of playing sports is probably the purest love I have ever experienced. Even now, all these years later, I still have dreams in which I make some sort of recovery, just enough to strap it on and grace the basketball court or the baseball diamond. Never at 100 percent, there is always some vestige of waking life—a limp, an inability to run at full speed, a sore back, something—but I am out there making the best of it. Usually, I am unable to sustain the pace of the game and the dream slowly fades. Not painfully, just fades.
Upon reaching rehab in Duluth, I am barraged by stories of wheelchair athletics, what’s out there, what’s possible. The intent is to soften my loss by showing me what I can still do, what athletic expression is still available to me. If I can get back on the horse, so to speak, then I can prove that my disability has not kept me down, has not changed me too much.
Steve is the wildly successful embodiment of this healing vision. His arms are the news. “Swimming is a fabulous way to strengthen the upper body,” I am told. My imagination cannot really envision how a paralyzed body swims, but no matter. I am anxious to meet Steve, even nervous. It’s not that I am excited by wheelchair sports. My heart is too sore to truly go there. But I am curious on a couple of levels. First and foremost, I want to see those arms, how they ripple, how they look in clothes. Will they stand out? Will their strength be tangibly felt? I want to know.
My other curiosity, one I cannot really articulate, is what a stellar wheelchair athlete will look like. Will something stick out about Steve, something that marks him as an exceptional athlete? As he comes around the corner, he is wearing a jacket. I am disappointed. How am I going to see those pipes? He has brown hair, quite a thick mustache, and serious eyes. He is about twice my age, and his upper body seems to dwarf the back of his wheelchair’s seat. There is wonder hidden under that jacket, I think to myself, but we talk about wheelchairs. His is so different from the hospital loaner I am using—lower, more compact, seemingly contoured around his body. This isn’t far from the case. The cutting-edge modification done for sporty wheelchairs is called cambering the axles. This angles the wheels so the space between them is wider at the ground than it is at the top. It also slightly reduces the width of the seat back. So Steve’s torso is, literally, bulging out of his chair.
“Why is your chair like that?” I ask.
“You mean the wheels? Well, there are a couple of reasons. The wider wheel base on the bottom saves the hands. Going through a narrow doorway, the bottom hits, not the top.”
“You’re kidding. I never would have thought of that.”
“You’re new at this. The cambering also makes the chair more snug, makes you able to change direction with only your torso; it makes the chair more responsive.” I am getting an education. I know this is supposed to be cool. “The axles are also moved forward to make the chair extra tippy.”
“Why?”
“That way you can pop a wheelie just by leaning back.” He sees the lost look in my eyes. “When you come to a curb, you don’t have to break your momentum by touching the wheels; you can just pop the front wheels up and get over.” This explanation means nothing to me. He smiles and nods, “You’ll see.” After a pause, he says, “Having the axles forward also makes a tighter turning radius. It helps getting out of tight spots. You’ll have a few of those.” He laughs again and shows me by maneuvering around my hospital room. “Last but not least, having the back wheels moved forward creates better pushing power. You can grab farther back on the wheels, get a longer push.” He demonstrates by leaning forward and taking an imaginary stroke.
“It looks like you’re sitting at an angle, with your butt lower than your knees,” I say.
“Good eye. You’re catching on. This also helps pushing power. In order to get the leverage for a good push, you need to get your head and shoulders out over your legs. Sitting on a slant forces you to lean forward.” Again, he demonstrates. His body position brings to mind a rocket.
We move out to the hall and he shows me how well his chair works by zipping around. He is so adept; his chair glides with fluid speed like a wave beginning to break. Body and chair moving as one, they have merged. His legs overruled by wheels, his upper body leads his presence, while his new, circular limbs distribute his strength. He and I are so very different.
We move back into my hospital room. I catch a break. Apparently hot from wheeling around, Steve removes his leather jacket. There they are: the arms I have been waiting for. They do not disappoint. They have amazing bulk, not rippling but shapely, even when not flexed. I want to see them at full engagement and am tempted to ask him to imitate a bodybuilder. Thankfully, I feel too silly. I do notice a tattoo on the outside of his right arm. Back in the late seventies, tattoos are still the domain of motorcycle gangs, at least to a thirteen-year-old. I bet he parties, I think to myself. Regardless, the tattoo gives me an excuse to stare at his arms.
The visit finishes up. Steve puts on his jacket, covers those arms, and wheels off. Moving quickly down the hall, he cuts even more crisply around the corner as rubber pivots against tiled floor. I am left in a wake of confidence and cool. As my thoughts linger, it feels like the visit will simply rewind and begin again, as if I am watching a repeating film clip.
Back in my room, I am trying to reconfigure myself in light of what I have seen. So this is how it will be. I am simultaneously relieved and unnerved. With more experience and a better wheelchair, I won’t always feel so awkward, so out of place. Eventually, I will feel like I am sitting in a wheelchair, not on one, that balance and focus will lead my movement, not the lumbering feeling of disconnection. But I am also unnerved by Steve’s presence. Losing boundary between myself and my wheelchair, becoming the speed of wheels and arms—is this the way forward?
Something in me resists. I love the feeling of my body. I always have, that’s why I have loved playing sports. The feeling of a baseball making quintessential contact with a bat, the hands gaining a privileged glimpse into a sudden elasticity of wood. The sound of a golf ball bursting forth from the driver’s sweet spot, the effortless soaring of what ensues. But a basketball shot, that’s even more serious. Not pure joy, there is more intent, a conscious collapsing of hoop, ball, and distance, all mediated by feeling. The feeling of the ball rotating off the fingertips like a lingering touch, the uncorking spring in legs and feet that fuel the ball’s rainbow arc, the satisfying sound of the ball cutting through the net. Sensual beauty disguised as competition.
Steve shows me more than how a wheelchair athlete looks or what magnificent pipes look like draped under bikers’ leather. He also shows me the natural consequence of a compensating healing vision, one that relies so heavily upon his arms. My legs will be traded for the technology of wheelchairs. I am being led to leave my paralyzed body behind and willfully engage the rest, to merge with my wheelchair and not look back.
Steve is only a messenger. In truth, what makes me uneasy has nothing to do with him and everything to do with me, with who I am, and who I want to be. As I consider the healing story that Steve embodies, my love of my body recoils and falls into invisible grass. It moves off to the side and waits. A lucky frog.
In some ways, everyone faces a similar choice about his or her body. As I strap myself behind the wheel of my car, in a virtual cockpit of lights and gadgets, as I move my consciousness into yet another technology screen—whether television,
computer, or cell phone—I know that I am disconnecting from my body. When I watch relatively healthy people ride the moving sidewalks in airport terminals or take an elevator up a single floor, I wonder about these choices. When I trade the feeling of warm water running over my hands for the convenience of a dishwasher, I know that I am losing something.
These are not mistakes or moral failings. They are simply choices. They are choices we make that define how we interact with our bodies, and they shape our consciousness. If I had chosen to embrace the speed of my wheelchair and become a successful wheelchair athlete, you would not have judged me to be morally lacking. In fact, you might have admired my determination. These choices do not make us good or bad people. But they do determine the connection we experience to our bodies.
The Industrial Revolution and Information Age have had an unintended consequence—they have moved us farther away from our bodies. This is not a necessary consequence, however. I am not saying that we should spurn technology. That’s as silly as saying that I should have refused to use a wheelchair. I can use my wheelchair and still keep a vibrant connection to my whole body. It does mean, though, that I must make the process of integration with my paralyzed body more conscious, more focused. As a paraplegic, I can no longer rely on the normal course of my daily life to ensure a healthy connection between my mind and my body. The same is true for all of us.
It is nearing the time when I will leave the hospital and live at home. Now I am even able to sit in my wheelchair without my body brace. So tiring, so naked this feels, but I am finally winning, finally becoming a body free of medical props. After just two hours of this sitting, however, I must sleep, not just because I am simply tired, but because I feel boneless, shapeless, without clear definition. Instability along the spine is like stepping off a three-inch curb and having it turn out to be a six-inch drop. It is not the pain of your surprised knee joint as it receives the pavement. It is the groundless feeling of reaching for the pavement while in descent. But I am healing; somehow, my body is healing. Each day, the lost reference within my back becomes more found. I am regaining autonomous shape, the sturdy, upright feeling that distinguishes your skin from the world around it. As my shoulders, head, and neck regain their confidence, my view is recovering its platform.
My mom and I have two final consultations with my doctors. The first one is with my orthopedist. He is the man who was my sister’s godfather and also arranged for my transfer from the hospital in Des Moines to the Mayo Clinic. My mom and I trust him completely.
The meeting is in a hallway. It is brief and to the point. He flicks my most recent back x-ray into the clip that holds the black-and-white transparency over a fluorescent wall light. The warbling sound of the bending x-ray fills my head. Dr. Van Pufflen’s expression is austere, his upper lip pulled tightly across his teeth. He is my doctor, but he is also sad.
“Matt, Paula, let me get you referenced here.” His finger runs across the picture. “As you can see, these are the Harrington rods.” I cannot believe how literal they look—parallel columns with interlocking nuts, bolts, and hooks—easily something that could have been purchased at a hardware store. “See how the x-ray shows there is no space between the vertebrae here?” Now, a pointing pen slides over the image of my spine. “This is where you have been fused. It all looks to be holding together wonderfully. That’s the good news.” He pauses and catches both of our gazes. “It’s below this point that’s of concern. Well, not concern. It was expected, but I was hoping you’d get lucky. But see how your spine is beginning to curve.” The pen travels to the vertebrae just below the rods. My stare is fixed; my breathing is shallow but peaceful. I am used to getting bad news. “We don’t know where that curving process will stop.”
He goes on to explain that my back is forming what is called traumatically acquired scoliosis. The surgeons at the Mayo Clinic had opted not to fuse my entire spine. Their hope was that the extra rigid support would not be needed. But because my upper back is so stabilized and I lack any abdominal control, there is no resistance to hold my curving middle spine in check.
My mom is silent. She is waiting for his guidance. Finally, I ask, “What can we do?”
“For now, nothing. We have to wait and see. We’ll monitor it on a yearly basis.”
“And if it continues?” my mom asks.
“If it gets beyond a certain point, Matt will have the rest of his back fused.” I am not reacting; unconsciously, my mind shifts to survival.
“What does that mean? What kind of recovery period?” my tone flatly demands.
“Let’s not go there. It may not happen.” He sees that my hard stare will not release him. “After the surgery, a month or more in bed, some time in a body cast, and then about six months in a brace similar to the one you are wearing now.” My mom looks at me; she knows my heart is breaking. I am still looking for a way out.
“There must be something we can do,” my voice implores.
He clears his throat. “There’s nothing. We have to let nature take its course … see where your spine lands. It’s out of our hands.” As my attempt at anger gives way to an onrush of silence, I feel sleepy.
This is another bad healing story. I have been made subject to my back, to a passive hope that it won’t curve any more. I leave that meeting disheartened. The force of the blow to my upper back is continuing its wayward dance. The first wave registered in an instant and shredded my spinal integrity. This second wave—an echoing of sorts—extends my breaking, slowly, over time. Never free of its grip, my only option is to wait for it to get worse. I feel an accelerated glimpse into death, into a dissipation of form. I feel like I am flying apart, like I did on the Foster frame in the intensive care unit. And yet, I find myself wheeling down a corridor to an elevator, to push a button, to return to my temporary home, to where I will push another button that raises and lowers the height of my bed.
Our second consultation is with Dr. Goff, my rehabilitation doctor. He has recently finished his residency at the Mayo Clinic. He comes highly recommended by my previous rehab doctor, the one from the tundra I imagine as Iceland. He is soft-spoken and avoids eye contact. He is left-handed and curls his forearm and wrist as he writes, as if protecting something precious. He always looks like he just woke up from a nap, his wavy hair in disarray. The meeting is in his office, a room just off the physical therapy gym. This morning he looks particularly disheveled. His tone is factual as he lays out my prognosis during a sweeping monologue.
“Living with a spinal cord injury is hard work.” He forces a glance upward at us and then returns to his downward gaze. “Of course, Matt will never walk again, but you already know that. His best bet is using a wheelchair, as he is not a viable candidate for long-legged braces.” My mom and I are both surprised. There has been virtually no talk of this option. I figure he must be covering all the bases, regardless of the particular patient. “Obviously, a central issue confronting a paraplegic is bladder and bowel management. I recommend that Matt continue using a Uro Sheath—an external catheter. Our attempts at training his bladder to follow a structured emptying pattern have for the most part failed. This is not a surprising result, and his bladder seems to empty well enough on its own. Many of our patients find the Uro Sheath the most practical, hassle-free option anyway. As far as Matt’s bowels are concerned, that is pretty much up to you. Suppositories or digital stimulation, it’s your choice.”
I am getting irritated. I want something new and important from this meeting, not a rehashing of what I already know. “Spasticity. Matt does suffer some from this. We could medicate, usually with Valium, but he has made it clear that he wants to keep his mind as sharp as possible.” I smile faintly with some pride; I have shown some mettle. “If the spasticity ever becomes too burdensome, however, then come back and see me. Sexual intercourse. The ability for a paraplegic to experience an erection varies from case to case. You’ll have to wait and see.” I smile because I already know this is not a problem for m
e. “Children. The likelihood that Matt will ever biologically father a child is slim to none. This is true for two reasons. First, the sperm tends to be of lower quality. We think this is because the temperature in the reproductive system is higher than normal due to sitting all the time.” He waits for comments. I have none. I didn’t know the details, but I knew the result. The silence has already helped me accept what I am too young to want. He continues, “Second, if the patient is capable of ejaculation at all, it is usually what we call retrograde ejaculation. This means that the sperm travels not outward through the penis but back into the bladder.”
“Why?” I ask.
“We don’t know.” Dr. Goff forces another look up to acknowledge ignorance and moves on. “The most troublesome long-term issue facing spinal cord injuries is urinary tract infections. There is really no way around this. Your bladder, Matt, just doesn’t empty as well or as often as the average person’s. This means it is a wet, dark, warm place—a breeding ground for bacteria. I recommend that he take a half-dose of antibiotic each day.”
“For the rest of my life?” I blurt out.
“I’m afraid so. This is the best option against what is a potentially serious problem. The leading cause of death among spinal cord injuries is kidney failure, and there is a direct correlation between frequent bladder infections and kidney trouble. In fact, Matt is a likely candidate for dialysis later in life.” This hospital has recently opened a dialysis unit. A nurse took me to see it, but I hadn’t known why. My face is beginning to sting. “Another big problem area is skin breakdown. Matt has already experienced a host of pressure sores. This is somewhat worrisome. You see, each time the skin breaks down, it regenerates only about 70 percent of its previous resilience—the more it breaks down, the more likely it is to break down. Matt will have to watch this closely. A major pressure sore is both costly and time-consuming, usually weeks in the hospital. We have taught him about constant weight shifts while sitting and have given him two mirrors so he can inspect the skin on his butt each and every day.” The word butt sounds so funny coming out of Dr. Goff’s mouth—an off-balance attempt to display comfort with bodies and people and informing patients of their bleak futures. I can’t tell if his factual approach is a device to protect a big heart or if his shyness hides a deep-seated disinterest in the actual lives of others. What I do know is that I am growing tired of his voice, his flat intonation, and his brown halfboots that zip on the inside of each ankle. “Another problem Matt faces is hyperdysreflexia …”
Waking Page 10
