Balancing Act

Finding Balance Through Disability

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By Naomi J. Miller

Last April, the left side of my body went numb: not all at once, but in escalating stages. So on the first day, I could still go for one of my daily five-mile runs, stumbling only slightly when I could not feel my left foot. But within a week I could no longer run, partly because I had lost my left field of vision, and by the second week, I could no longer walk on my own, having to rely instead on a walker to hobble down the long hallway of our house.

My 8-year-old daughter asked me that day, "Mama, are you old now?" This is the year I turned 40, and although I may seem old to an average 8-year-old, I had never seemed old to my daughter before.

After a series of tests, my doctors diagnosed multiple sclerosis, a disease in which the body's immune system attacks the myelin sheathing of the nerves, resulting in scarring (sclerosis) at multiple sites. The scarring interferes with the messages being sent by those nerves, causing symptoms such as the numbness and loss of vision that I was experiencing.

The numbness that disabled my body this past spring taught me some difficult lessons about balance, in more ways than one. When I found myself hoping for a day in which I fell down less than three times inside my own house, I felt at first as if my body had betrayed me. My daily balancing act was no longer, literally, possible. Gradually I came to see that my definition of balance needed to change. I have inhabited this body for 40 years that have included the bearing and nursing and raising of four children, the running of two marathons, the playing of hours of music upon the piano, the teaching of hundreds of students, the writing of hundreds of pages. My body has not betrayed me. It is simply that I have run head-on into the inescapable fact that I cannot, by sheer force of will, compel my body's performance to my own ends. It's a lesson I would have had to learn sooner or later. Better that it be sooner.

In more ways than I have space to mention, the diagnosis, rather than being disabling, has been enabling. Ever so slowly, I am coming to learn patience with the apparent limitations of my body. It's been a tough lesson, and I've been a reluctant student. But my most difficult homework has been learning to include "rest" in the balance of my life.

I had long regarded rest as a waste of time -- less valuable than everything else I had to do and chose to do, whether as a writer, a teacher, a mother, a runner, a pianist, or anything else in my life. Now I am coming to understand that I must learn to discipline myself to rest my body even as I long ago disciplined myself to embrace running, although that was willingly and this is reluctantly. And I have learned to take the discipline of rest in stages.

If you have the choice, don't wait for a disabling experience to force you to evaluate the amount of rest you allow yourself daily. Try challenging yourself to take a full 30 minutes of rest time during a working day. I can warn you right now, you may need to take it in stages, like me. An hour of rest, like a marathon, must be built up to gradually. I'm not kidding.

The discipline of rest now includes, in my case, daily prayer, as well as quiet time in no one's company but my own. Time to read and reflect, time to write in my journal. Time to breathe. Literally. It is remarkable what a difference a series of relaxing breaths can make, whether you take breathing exercises from yoga or other meditative schools. Try taking a slow deep breath after every paragraph in this column. That is what I have been doing.

Some days, with my continuing left-sided numbness, I wonder if I will ever completely return to "normalcy," or if this is as good as it gets. When I asked that question, one of my neurologists replied, "not to be facetious, but any of the above." I have been learning to cope with my still-existing physical limitations with the help of a range of supports, including physical therapy that helped me learn to walk again on my own, and voice-activated software that will enable me to produce documents less hampered by the numbness that still partially disables my left hand. And although I cannot run, I have been working out with some weight-training as well as yoga. Interestingly, my daily workouts are often quite literally centered on attaining balance.

The uncertainty that is a hallmark of my multiple sclerosis is only another version of the uncertainty of daily life, after all. Certainties come not through our circumstances, but through our hopes and beliefs, the passions and convictions that keep us moving forward on the path that opens before us, even if we can only balance one step at a time.

My disability has enabled me to rely on the grace of others. The first neurologist who gave me my definitive diagnosis this spring discouraged me from attending a professional conference that I had been looking forward to for months, saying, "If I were diagnosed with multiple sclerosis, I wouldn't want anyone in my workplace to know." I was so taken aback by his dismissive remark that I had no response at the time. Not only did I find a new neurologist, but I attended the conference anyway. And in due course, I found that some of my greatest sources of support were colleagues from my own department and the University of Arizona Disability Resource Center, as well as my family and friends. The grace of others balanced the burden of disability in my life.

In my work, the diagnosis has enabled me to put my heart and energy into a new creative endeavor, writing a novel. And it has even had positive effects on my family life, because the fabric of the family had to tighten when I couldn't stitch everything up in my usual role as maternal organizer and facilitator.

I won't deny that my multiple sclerosis flare-up served as a brutal and at times frightening challenge. Yet ultimately, it was an enabling force in my life, opening my eyes to a community of compassion among my colleagues in the workplace that I might never have glimpsed before, and illuminating for me the blessings that surround me already. Going numb and losing my balance, I found myself actually awakening at the deepest level to a balance of body and spirit that now sustains me daily.

As for "rest"? Taking it in stages means that I celebrate even a 10-minute break in the midst of a consuming and compelling task like writing this column. And on some days I even shut my study door and turn off the phone for an entire hour without feeling guilty.

I have come to realize that welcoming rather than disdaining the rest necessary for renewal is a matter of life and breath. Every marathon begins with a first step. If you step forward from the stillness of rest, you will be poised to stay the course.