MAKING MUSIC WITH WHAT I HAVE LEFT

Carolyn Schrock-Shenk

If someone had told me in college that I’d become handicapped in my 40s, I wouldn’t have believed them. I was athletic—a farm girl more comfortable climbing trees, milking cows, and wrestling my brother than cooking, cleaning, or even studying. My family was very active as I was growing up, and my world was dependent on my physical abilities.

I also got good grades in school, but that wasn’t valued in my family the way physical abilities were. Even after childhood, our family gatherings have continued to be very active—from volleyball to crazy relay races. Along with hard work, activity is what I learned to value highly.

In 1980, when I was a senior at Eastern Mennonite College (now University), I encountered what I believed only happened to other people. I was in a car that rolled down a steep embankment in the middle of the night. That began a journey that has intensified over the years, with the last several years being the most grueling yet.

After the accident I was told that my back injury should have paralyzed me—my surgeons called me a miracle after they operated and saw the damage. I said then that I believed I wasn’t paralyzed because God knew I couldn’t handle life in a wheelchair. While I may have ultimately been wrong about that, I am deeply grateful for almost 25 more years of walking.

Several years after my injury, I began to notice weakness in my left ankle that caused an uneven gait and occasional tripping. I gave up running and skating. Some years later a marked limp made me I give up tennis. Then my balance became too precarious to withstand hitting a ball; I gave up volleyball.

Those losses were all accompanied by a fierce denial that served me well and kept me focused on what I could still do. By summer 2003, however, I only had biking and a kind of hobbled walking left. I fell a lot. On some days I had excruciating pain.

I was forced to begin thinking about the possibility of losing my mobility altogether. After months of deliberation and the discerning help of friends and family, I underwent a risky, two-step surgery to try to stop the degeneration. Paralysis was a possibility, but I didn’t really think it would happen.

The two surgeries in Miami turned into six, with months of hospital stay. Though my legs had no sensation when I finally came home from the hospital, I had a fair amount of function left. I was thrilled and immediately began physical therapy. I was sure I would walk again. My neurosurgeon didn’t think it was possible; I knew I could prove him wrong.

But the weeks stretched into months and, despite hard work, I made little progress. Finally the truth began to sink in. While my upper body strength let me drag myself behind a walker for a few yards, I would never walk functionally. I would spend the rest of my life in a wheelchair. I plunged into a terribly low place. I pled for healing. I begged God for it. I couldn’t imagine surviving life if I couldn’t walk.

Healing was on my mind from the moment I woke in the morning to when I fell asleep at night. And in between. Many times I squeezed my eyes shut and willed my legs to regain their strength. I truly believed it could happen. "Ask and it shall be given you." "If you have the faith of a mustard seed." "The lame shall walk and the blind see." "Will God not give good things to those who ask?"

But it didn’t happen and I finally gave up on healing. I stopped begging. I resigned myself to life in a wheelchair. I began to focus on adjusting to what that meant.

My adjustment attempts were short-lived however. After another small surgery to address a new cyst on my spinal cord, everything seemed to fall apart. Through all of that semester, while attempting to teach one class, I encountered one physical challenge after another.

Then the most devastating blow: Over several weeks, just after borrowing an exercise bike to strengthen my legs, all of my remaining leg function leaked away—and with it went trunk muscles that enabled me to balance while sitting. I have no movement left in my lower body. These losses have made negotiating life in my wheelchair exceedingly more difficult; I grieve them deeply.

It was after these losses that my image of God took a real nosedive. What kind of cruel trick was this? What kind of God would allow me to be kicked when I was already down? I found myself thinking of God as a punishing God, one who gives—or at least allows—the exact opposite of my desires and prayers.

One day I was sitting on our deck thinking about what it would be like to be blind. I remember feeling a deep gratitude for my eyesight. My immediate next thought was, I can’t let God know how much my sight means to me or I’ll have it taken away too. Of course my head knew that that kind of thinking was flawed, but it came from the deep grief within me.

I no longer wanted to live. The life I had been handed—a wheelchair and a constant stream of new problems—didn’t seem tolerable. Death seemed the only way out. Plus I was sure my family and friends would be better off without the added burden I had become. I again pleaded with God, begging God to let me die. But that didn’t happen either, and eventually I gave up on dying as well.

Not long after this I decided to stop asking God for anything. Anne Lamott, in her book, Traveling Mercies, talks about two kinds of prayer: "Help, help!" and "Thank you, thank you." I had been praying the help kind for a long time, so I decided to abandon those and simply thank God for the things I could truly be thankful for.

That commitment to "thank you" came more out of giving up on "help" than it came from the inherent goodness of thanking God. Even so, I suspect the act of gratefulness began to do a little healing work on its own.

Indeed, there was much to be grateful for when I allowed myself to notice: the love from so many that surrounded me; wonderful, competent doctors; analgesics that took the edge off the pain; anti-depressants that took the edge off the despair; a beautiful setting in which to heal; good health insurance; the use of my hands (I’m so grateful for the use of my hands) and much more.

More recently the problems have decreased, and I am slowly becoming stronger and healthier. I am very grateful. Despite yet another two surgeries to address an infected shunt, I have some new physical and emotional energy. A wonderful hand-pedaled bicycle and learning to drive with hand controls is adding to that—as is being back on campus.

This new energy is enabling me to continue the work of adjusting to my very changed life. That adjustment is requiring a major identity change. Even through the years of gradual loss, I understood myself to be fast-paced, full of energy, self-sufficient, able to multi-task, a risk-taker. But those characteristics no longer fit. . . .

Part of my former identity was my commitment to peacemaking. I am passionate about peacemaking because I believe reconciliation with God and with each other as human beings is the essence of the gospel. But periodically in the last 25 years, and particularly in the last few, I have been almost completely consumed by my physical health—at the expense of my passions. And though I am growing physically stronger, my identity now includes being handicapped and will continue to require lots of energy.

I AM more than just the chair I sit in—much more. And I hope to embrace some of my passions again. At the same time I am aware that being a "crip," "handicapped," "physically challenged"—whatever you choose to call it—is now as much a part of who I am as being white and female and heterosexual. And it will always demand energy-sapping accommodation.

Being physically challenged means I must constantly deal with issues of dependency. I was fiercely independent in every way that I could be before landing in this chair. Now I am having to learn the hard lesson of being helped and having things done for me—day after day.

I am constantly second-guessing how others feel about the extra work I represent. My attempt at some independence in transportation has had its own unexpected problems. Several weeks ago, while navigating my electric wheelchair from my house to the college, I got stranded. My aging, second-hand chair just quit—and sat on the sidewalk beside the hospital.

After considering my limited options, I began waving and motioning to motorists who were turning into the hospital drive several yards in front of me. Six to eight vehicles passed by without stopping. What institution did she escape from? they may have thought. Finally two nurses on their lunch break walk called security, who brought me a cell phone so I could call someone to rescue me. (I have since become the humbled owner of my very own cell phone, as well as a new electric wheelchair.)

Interactions and social activities, as a person who is waist high to most adults, have shifted. I remember an experience at a church assembly some years ago. I was standing, talking to an old friend about the state of the church. He was eight or so inches taller than I, though that was not problematic initially. Before long we were joined by two other men friends, also quite tall. The conversation continued comfortably for a bit. Then slowly I began to realize that the current of words, questions, and ideas were flowing above my head.

I pictured myself jumping up and down to be included, though of course I didn’t. The experience was disempowering. I felt small—a diminutive version of my real self.

That image has come back to me often now that I am in this chair. So much interaction—conversation, eye contact, facial expressions, singing, prayers—all happen at a level over my head. It is not anyone’s fault; it is just the reality of living like this in a walking world.

I am needing to rework my body image. My body has ceased to do what I have expected it do and to look how I have wanted it to look. It is no longer celebrated for its capabilities. My body has become something to be examined, X-rayed, and puzzled over by medical personnel.

My body now presents me with a host of new problems I must manage: pressure sores, contractures, circulatory problems, digestive difficulties, shoulder stress, and more. My body is lifted, carried, touched by friends who would never touch "normal" people in the same way. Many people do not perceive those with a disability like mine to be sexual beings anymore. We are still sexual beings, though indeed, we all need to find our way in this.

I am needing to reconcile the deep longings in my soul. I miss so many things besides walking. I miss the ability to do things fast and cram a lot into a day. I miss the feel of a good foot rub and water on my body. I miss playing soccer with my sons and leaning over to kiss them good night. I miss running errands, gardening, traveling with ease—and the potential for leading cross-cultural student trips. I miss visiting friends and family without being carried up steps. (Check out how many houses don’t have steps.) There is so much more and I ache with these losses. I am working to grieve them, then let them go.

How would I summarize what I have learned so far? It’s hard to distill the learnings, because my journey is still so much in process. But a few things come to mind.

I have learned that life doesn’t always turn out as we expect. John Lennon said "Life is what breaks in on you while you’re busy making plans." Indeed, sometimes the gap between our plans and dreams—and reality—is huge. Bigger than we could have imagined or believed we could handle.

Which leads me to a second learning: Lament, whether it’s in the form of anger, grief, or doubt, is good. It is honest and cathartic. And it is very biblical. Check out the laments in Psalms the next time you’re feeling low. A third to a half of those chapters are laments of some kind. They are full of pain, anguish, fist-shaking anger, and even accusations. "Why, O Lord," mourns Psalm 10, "do you hide yourself in times of trouble?" . . . "Why are you so far from helping me? . . . God, I cry by day, but you do not answer; and by night, but I find no rest." Not only can God handle our lamenting, but I believe God also honors it and holds us gently as we rage and cry—whether we can sense it or not.

I have learned in a new way the critical importance of community. I have been surrounded by so many caring people, including this college community. This cloud of witnesses has been God’s love incarnate through these difficult times. There are so many people in this world encountering challenges much worse than mine—and doing so with little or no community support. I hope to never take this gift for granted.

I am learning that people—friends and strangers alike—generally respond to differences like mine out of a good place within them. Of course there are exceptions, and those exceptions are what get noticed and make news. But I believe that people’s responses to me as a person with a disability generally come from understandable, healthy curiosity or empathetic caring.

I don’t want people to "walk on egg-shells" around me—afraid of saying something insensitive or politically incorrect. My disability is now a basic part of me, and I don’t mind being asked questions about it. Nor do I mind people around me standing to sing or pray or dance. I am doing all these things with you—inside.

There is much more I have to learn, much growth that still needs to happen. I have not yet seen God—or goodness—in the reality of this chair. Nor am I a bit grateful for my paralysis. Perhaps that will change one day, perhaps not. I do not understand God’s role in suffering and healing and I am coming to terms with the ongoing mystery in that.

What I am clear about, however, is that God specializes in helping us mine the gold from these difficult situations and that much good can be part of my future. I am trying to trust that this life, so very different from what I wanted, can be rich and meaningful and complete. And that it can be a blessing to others. While I get glimpses of that occasionally, I am not there yet. But I hope I am on the way.

The story is told (though its sources and exact factuality are hard to pin down) of the night of November 18, 1995, when violinist Yitzhak Perlman slowly made his regular trek across the stage, with his braces, crutches, and painful limp a testimony to his childhood polio. He settled into his chair, signaled to the orchestra and began to play. Then—a string snapped, and the music stopped. The audience waited, knowing he would have to make his way laboriously back across the stage to find a replacement string or another violin.

Instead, Perlman did the impossible: he began to play with only three strings. Improvising, recomposing the piece as he played, he finished the performance, drawing powerful, awe-inspiring music from that violin.

As witness Jack Riemer of the Houston Chronicle is said to have reported on February 10, 2001, Perlman smiled into the wild applause that greeted his finale, "wiped the sweat from his brow, raised his bow . . . , then he said, not boastfully, but in a quiet, pensive, reverent tone, ‘You know, sometimes it is the artist’s task to find out how much music you can still make with what you have left. . . .’"

My prayer is that I can somehow make music with what I have left.

—In fifth grade, Carolyn Schrock-Shenk, Goshen, Indiana, was the fastest runner in her elementary school . She is writing a book onWhere God Went Wrong: Ideas for the Second Time Around and is Associate Professor of Peace, Justice, and Conflict Studies at Goshen College.