Similarly, the doctors present my paralysis and its accompanying silence as things to overcome, as obstacles that I must regularly confront and then actually defeat. If I am successful in this overcoming, I will become someone to admire, someone whose story may even be inspirational.
My arms are the symbolic workhorses of this healing story. Their imagined muscle mass is proportional to the will and effort necessary to push, pull, and drag my paralyzed body through life. Their strength is what will turn the tide, what will propel me to success.
Throughout the course of my rehabilitation, I am presented with three different role models. They are the success stories of three male paraplegics. They are proven examples of the path intended for me.
Dwight is from International Falls, Minnesota. He is seventeen and has just completed his tour of duty in rehabilitation. He must have been quite a guy, leaving a wake of powerful impressions with both the physical therapists (PTs) and the nursing staff. I am told that he was an “animal” on the bench press, able to lift 190 pounds, and remember, “that’s without his stomach muscles.” Dwight presents an apt comparison to my situation. Although he is four years older than I am, his injury is nearly identical to mine—the fifth thoracic vertebra is broken rather than the fourth. He also lacks abdominal control.
Apparently, Dwight was injured while wildly riding his bicycle on a country road. He lost control, flew off his bike into a ditch, and hit his back against a concrete culvert. He lay there for an ungodly length of time before somebody happened by. A tough cracker is how I had imagined Dwight. He had asked to spend extra time lifting weights, did wheelies off curbs, and, by the time he left, he “had arms the size of ham hocks.”
There is a problem, though. I am not that kind of athlete. True, I am very physical, but I’m not the weight-lifting type. I’m a team-sports guy, a ball lover, not a swimmer or a runner. Work and fun, that is what I respond to. Dwight, on the other hand, is a speed guy, a lover of engines. A fast talker and a fancier of trucks with roll bars, he enjoys aggressively pushing physical limits.
I do meet him some time later. He has sandy brown hair, wears a striped tank top and plain wire-rimmed glasses. He has a thick neck, and even thicker arms. We visit for a few minutes. In that time, he tells me three tales of speed and heroic endurance. He is back in the hospital after severely burning his knee. “I was ice fishing, had a few beers, and got a little too close to the woodstove. Couldn’t feel a thing … smelled it. Imagine that, my knee melting like cheap plastic and I could only smell it,” he tells me with a mixture of laughter and boasting. Dwight is an amazing guy, someone you shake your head at, smile, and hope that he stays in one piece. But for me, he does not inspire.
Meanwhile, my weight lifting is not going so well. I am told repeatedly that my arms must now do “double time for both my arms and my legs.” Building in my mind is an image of my arms, a fantasy of bodybuilder arms, rippling with flex. Many people add to this image. The rehab specialists do it to motivate me; a male nurse tells me that “chicks are going to dig it,” and with approving eyes, my friends and family beam, “Wow, those arms are going to be huge.” In fact, this healing story is still projected at me some twenty-five years later, now mostly by strangers. They see me pushing my wheelchair up a hill or putting it in my car and want to say something, empower me somehow, encourage the will they imagine it takes to overcome a disability. From the sidewalk, they might give me a thumbs-up, maybe even yell “Rock on.” Of course, the unspoken subtext of this cultural healing story is “You may not have legs, but wow, do you have arms.”
During my workouts in rehab, however, I drift out the window, not into my arms. I sit at the arm pulleys intending to do my five sets of twelve. Instead, time stretches out. I watch the flurry of activity in front of me. The rehab gym is full of people: standing people, walking people, sitting people, unable-to-talk people. Most of them are older, their dysfunction brought on by age. I am in between, too old for pediatric rehabilitation and definitely the lone boy beginning puberty. As I watch this scene, I set it against the view out the large, south-facing windows. My eyes are out of focus and gazing into the gray sky. This scene repeats over and over, day after day. I am not making the progress they would like, but through silence I continue to smile. I am aging much too quickly.
They keep changing my physical therapist. I suspect that they want to jump-start my progress, find a PT for whom I will work harder. I am gaining skills but at a slow pace, being just as happy to socialize with the therapists as I am to work. I like knowing about them and their lives. I like the feeling of them liking me, but not the feeling of my muscles against their weights. Something feels intuitively wrong about how I am being told to work. I am to press aggressiveness through my upper body: push, pull, jerk, and get the job done. But hasn’t enough of that energy already traveled through me? I am tired of bouncing and crashing and crawling back to center. I am willing to work, but let it be smooth, balanced, and even, like shooting a perfect free throw. This silence demands grace, not rupture.
Enter Rick, their ace in the hole, the PT who delivered Dwight to his heroic stature. Rick wears rimless octagonal glasses and hiking boots, has longish hair, and is the first vegetarian I have ever met. What he eats for lunch fascinates me. I am from a meat-and-potatoes family, and he strikes me as a quasi-alien. It turns out that his lunches aren’t that interesting—bits and pieces that add up to a meal: nuts and raisins, carrots and celery, and a peanut-butter-and-jelly sandwich. It seems normal enough, but I keep a suspicious eye on his paper sack, waiting to view the secret of what those people really eat.
Rick is sharp with my ways of procrastination. His voice is impatient when we are working. Joking is not an option. He is the first male therapist I have had, and his manner is different. He does not comment on my soft eyes or my long eyelashes. He has no interest in finding the hurting young child adrift in the silence. He challenges me to step up and “be a man.”
We are on an elevated, eight-by-eight-foot brown mat. In the last few days, I have just begun to make sliding board transfers. I direct my wheelchair alongside the mat; it is about four inches lower than my seat. I put one end of the board under my leg and the other on the destination. Lifting my body as best I can, I begin the slide downward. Sliding board transfers are the first and, for some, the only way to move in and out of a wheelchair. Eventually, with increased strength and a better sense of balance, no board is needed—one just hoists the body from one place to another. It is a long way off for me. Learning how to lift my legs onto the mat is also a challenge—a surprisingly delicate balance when living in a body without adequate sensors. But this, too, I am beginning to master.
Once on the mat, I feel like an exposed fish. There is no order to movement, just the stuck feeling of being contained within a strange body and under the heavy press of gravity. As I lie flat on my back, we work on sitting up from a lying-down position. I have already learned one technique. I roll onto my side, a formidable task in itself, which usually requires that I grab the side of the mat, then press down through my elbow and move onto my forearm. My other hand then pushes into the mat and, if the planets are aligned just right, I raise myself into a sitting position. But this method is not adequate for Rick—it has too many movements and takes too much time. There is a more direct way. While lying flat on my back, I am to force my elbows underneath me, then rock from side to side until enough momentum is created to make the space for one arm and elbow to lock straight. This, in turn, creates the space to lock the other arm straight. Once both hands are pressing into the mat, I am to rock back and forth and lift into an upright position. It is a difficult maneuver that takes much more strength and is particularly hard on the muscles that attach to my shoulder blades.
Not only am I unable to make the initial lift onto my elbows, I cannot get from there to an upright position. I am not aggressive enough and, by implication, not man enough. We have been working on it for days to no avail. We are both fru
strated. After yet another failure, I gripe, “Why can’t I just do it the other way?” Rick slams his hand on the mat, slides off, and says in a disgusted tone, “Dwight could do it, but fine, if you want to live like a quadriplegic all your life, go ahead.”
Apparently, quadriplegics do things one way and paraplegics another. Rick has mixed shame into my sense of failure. Is he miffed because my life will be adversely affected by an inability to aggressively sit up? Or is he tweaked because he hasn’t gotten the results he wanted? I wonder whose failure he is ashamed of. I am too young for these thoughts and instead pass deeper into silence.
Even this morning, all these years later, I was practicing yoga and was still able to feel Rick’s biting words. Now, I am strong enough to sit up in any way I want and more supple within my body than I ever imagined possible. I tried sitting up the aggressive way and then the “quadriplegic” way. The difference is that the latter is much more graceful.
Once again, I am lying on the mat, but now I am creating a little stir. For the last couple of hours, groups of physical therapists, including Rick, are standing in little huddles and talking quietly about me. Excitement hangs in the air. Beginning yesterday, there has been movement in my left foot—I seem to be able to flex it slightly back toward my face. Taken by itself, this is not such a big deal. Many spinal cord injuries create spasticity, a random firing of muscle fibers producing involuntary movement. But this movement appears to be different. It looks like I am controlling it, hence the whispering. They are whispering because they worry that my hopes will suddenly reverse, that I will become convinced that I am the lucky one, the one who will walk again. And what if it is a false alarm? Then my hopes will be dashed, acceptance will have to be relearned, all amounting to lost time.
I am examined independently by three different PTs. They ask me to move my foot. I move it. Mostly, I’m having fun; the heightened attention is pleasing. I feel like I have found twenty dollars in a pair of discarded pants. My mind is not really racing ahead; it all feels too unreal, more like a happy dream. But their secrecy, their obvious attempt not to include me, gets me wondering, “Hey, maybe something really is up!” The possibility makes me feel proud. “See, there is too some life down there in those legs.”
Amidst the hubbub, a PT student takes her turn with me. Laurie is overtly sweet, breathy, well intentioned, and has dark brown Farrah Fawcett hair. A cheerleader in high school, she will finish her degree in the allotted time and then promptly marry her sweetheart, the gorgeous guy who just happened to be the captain of the hockey team. She notices something the others have missed. When I try to move my foot, both my neck and latissimus dorsi (middle side back) muscles flex. She determines that I am creating the groundbreaking movement with my upper body. In short, she decides that I have been cheating. The others agree. As quickly as the excitement arose, it disappears. Huddles break up, whispering stops, and it is back to the matters at hand. In fact, they want me to forget the whole incident.
“Matt, you need to stop thinking about this, start thinking about your arms again,” the voice commands. “What matters most for you now is working on practical tasks and building arm strength.”
“But what about moving my foot?”
“That doesn’t matter. It doesn’t mean anything. Nothing has changed. You just devised a clever way to make it look otherwise. You tricked us.”
“I wasn’t trying to trick anyone. It just seemed like I could move my foot.”
“I know, but don’t hold on to that. It has no neurological implications. Your severed spinal cord is not spontaneously reconnecting. You’re still completely paralyzed. The faster you accept that and move on, the better.”
I feel humiliated, silly that I even attempted to move my foot. I remember my forgotten phantom feelings. Once again, I feel oddly ashamed. “Sorry, I don’t mean to be a bother,” I want to call out, to save face. “I wasn’t trying to escape my life … I just thought … I’m sorry … I’ll try to do better.”
That boy has sting on his face. They have set yet another healing story, a pivotal one. It is the practical complement to the story about the phantom feelings. The doctors have already convinced me that any sensation that I might hear within my paralyzed body isn’t real; that it doesn’t, in fact, exist. Now, the PTs set forth a reality picture that values only one kind of reconnection with my paralyzed body, namely one that travels physiologically through my spinal cord. Anything short of that I must leave behind. I must move willfully into my arms and forward with a body that is barely mine.
There is another way forward, however. A spinal cord injury is experienced fundamentally as a mind-body injury. Is reversing the damage to my spinal cord the only holy grail here, the only potential source of mind-body integration?
My injury is experienced inwardly as a separation between mind and body. This makes reconnecting my mind to my body essential to my healing process. This, in turn, makes it imperative that I can conceive of ways to do so. I accept that I will never walk again. But the ability to voluntarily move my paralyzed legs is not the only measure of success. There are others. For starters, it is important for me to experience any kind of connection to my paralyzed body that I can.
Was it healing when I was moving my foot even though I was “cheating”? Yes, yes, yes. Was it a beginning step in my process of mind-body reintegration? Yes, yes, yes. Anything I do to reconnect my presence to my paralyzed body is a form of healing. So what if I used my back and neck muscles to move my foot? I was making a connection to my body below the point of my injury. It was groundbreaking. I was moving through the silence of my paralysis and toward my body.
This marked the beginning of perhaps my most important realization—that there is healing other than healing to walk again. I do not mean simply that more than physical healing is possible, for example, additional psychological and emotional healing. I mean that healing is still possible for my mind-body relationship, and it doesn’t mean that I will walk again. Unfortunately, I do not fully grasp this until I begin to practice yoga many years later. In the meantime, that thirteen-year-old boy was stuck believing that the damage to his spinal cord was irreversible. More important, he believed that reversing it was his only healing option. In such a case, where could his healing go? “Into your arms,” the voices boom.
9
Wheels, Not Legs
They say a frog thrown into boiling water will jump out. But a frog set in cold water brought slowly to a boil will remain until it is too late. The long-term effect of my rehabilitation was like entering a slow boil. Over time, I became a shell of myself. I was able to maintain a smile pointed outward to gather the world’s approval, but inwardly, I was turning gray and creeping dangerously close to dissolution. Thankfully, I am a lucky frog and was able to jump out.
The second of my potential role models is shuffled through my thirteen-year-old awareness. Dennis is an amazing guy. He owns a business, is an active citizen within his community, and even serves on his town council. He is a friend of a friend of my father. I can tell my mom is excited for me to meet him. This is the person she envisions as a role model. She wants me to see someone living an active life, a normal guy who just happens to be a paraplegic.
Dennis is married, has curly brown hair and a catchy smile. Married catches my ear, as I am afraid that this is no longer possible for me.
“Were you married before or after?” I ask.
“Before … and had two kids.” My heart sinks a little. But I am trying to see as much as I can in Dennis. I want to please my mom.
“Did she have trouble adjusting—your wife, I mean?” I am still looking for my angle.
“Why would she? I’m still the same guy.” I hesitate as I wonder if what he says is true. “She’s been great, really been there for me. Wasn’t always easy, but we managed just fine.”
I am feeling uplifted, like something about my life ahead can be normal. I want him to talk about little things, like speaking at a public meeting
or eating at a restaurant. I do not know how to ask such questions or even that I want to know such things. But I do want something, an intangible. I want him to tell me that I will have a place in the world.
The conversation lags as I struggle to get what I need. Dennis reaches into his bag and pulls out a series of pictures. It is not joy on his face; it is stern satisfaction, his accomplishment, his proof. Apparently, Dennis was quite a deer hunter before his accident. He still is. He tells me a story about last year’s hunt, about killing, gutting, and dragging a deer from the woods without anyone’s help. He has the pictures to prove it. There is one qualification though. “I did use an ATV four-wheeler,” he laughs as he pretends that this might tarnish his achievement. As I am playing along, I try to laugh with him. “But at least I hooked the chains up by myself.” His sentence hangs in the air because our laughter was false. Each time I try to bring the conversation somewhere else, he inevitably swings it back to his trophy. “I didn’t go this year, got too busy. But next year, you can bet …”
His hunting story is so dominant that it pretty much ends the visit. I close my eyes and try to absorb his tale in the spirit it was offered. He is giving me a gift, a marker, proof that his continuity has remained. That mine will, too. With enough determination—a four-wheeler notwithstanding—anything is possible. His healing story has been earned through his will.
I am confused by his visit, saddened. I am old enough to think that he has missed the point, that he misplaces his accomplishments. His community-oriented life proves its own worth, not the deer he drags from the woods. And yet, fifteen years later, I will make my version of this mistake. My body will pay the price.
Waking Page 9
