Living Without From Within
Navigating The Paths of Illness and Disability
I was a bit taken aback one evening not long ago, when my wife and I were at dinner with another couple. “To health!” the fellow toasted. Sitting in my wheelchair, I raised my glass as well but, “Hmmm,” I thought, “why to health?” If I were to identify values that are at least as important as health, my long list would include beauty, friendship, love, wisdom, gratitude, courage, or truth.. Yet with the possible exception of friendship, our glass is rarely raised to these equally worthy goods. Why health?
Assuming he meant physical health, I’d place this toast in the same category as “to prosperity” or “to a long life,” which to me salute economic security and sufficient time to enjoy and repay the gift of life. But if the toast is to “health” because physical “illness” is viewed as intrinsically bad, I object.
After all, what is health? Its original meanings gather around not healing, but wholeness, holy and sacred as well. And the word ill, appearing around 1200, has less to do with physical distress, than to be malevolent, evil, unfortunate, bad. But surely healthy people are not particularly holy, nor those of us who are ill notably wicked.
Might it, in fact, be possible to use illness as a way toward greater consciousness in the service of decent values? The toast and my silent reflection upon it were a miniature replay of the fundamental question of philosophy: “What is the good life?”
Is physical health one of the conditions necessary to pursue our cherished aims and goals? Since most of us will experience illness or some degree of disability as we age, is the good life limited to only our “peak” years or enjoyed by only the fortunate, perpetually healthy few? No. Ill or not, we are all in the same boat. Although death surely comes, we don’t rush to greet him; we keep pursuing our desires.
It’s now more than 35 years since my diagnosis of multiple sclerosis. Occasional stumbles, trips, and falls have given way to a cane, then a walker, and now a wheelchair, full time. My MS is not cured; no symptoms have disappeared and some have worsened, but all are manageable with a variety of interventions. Many activities I enjoyed before my diagnosis are no longer available to me. Yet, I describe my health, as do many of us with illness, as good. With allowances for aging—a condition we all share—from my point of view my life is better. My path toward healing and making a richer life from the stuff of suffering continues.
I am reminded that in the central narratives of many religious traditions, it is often that which is most despised or vulnerable—the outlaw Moses, the hunted infant Jesus—that is the source of new spirit and hope. And the messenger of hope and spirit (Elijah the Passover guest, or in Muslim tradition Khidr, the “Green Man”) is often invisible or disguised. We can never know in what person or situation we might find wisdom, help, or dharma.
Sometimes, Rabbi Adin Steinsaltz reminds us, “The call comes not through any kind of a voice; sometimes the call comes because you are put into a position in which a choice is made for you which you never imagined. It may begin from anything—from an accident to a disaster.”
The Minotaur, half man, half beast, as monstrous as we may feel our ill or disabled selves to be, is contained within a maze to protect him from his own frustration and rage at his mixed condition and conflicted nature. Theseus rescues Ariadne from the maze following the thread she uncoils to the center of the minotaur's world. We too need threads to help lead us out from the constrictions, turnings, and unsatisfied hungers we may experience in our world of illness and disability.
A step out of the maze toward healing is to take responsibility for my illness. What do I mean by this? Did I “cause” my illness? It is possible, but very unlikely. Chronic illness is something that happens for a variety of causes, known and unknown. There is no blame.
Then what is “taking responsibility”? It is simply the ability to respond with attention and care in an ongoing way to whatever the fates have delivered to me. Who else but me? One way or another, consciously or not, I will establish a relationship with my illness. Unwanted as it may be, it is a lifelong partner for better or for worse, in sickness and in health.
Yet we may fear that not struggling is surrendering. Some may suggest to us, for example, that we “do battle” with an illness to overcome it. I may be encouraged to see the illness as an enemy within my body, an alien attacker. Alternatively, we may be told that living as if the disability does not exist is the best policy.
Both these approaches are flawed. The first creates an unnecessary antagonism between different aspects of oneself. The second denies the reality of both the disease and the human capacity for healing. Unfortunately, to view disease as an enemy or to ignore its presence does not make it disappear. I must get to know it, live with it, come to terms with it.
This doesn’t mean that the illness is my friend. Rather, I must accept it as an unwelcome companion on a long journey and acquaint myself with its moods, departures, and returns. The word is rooted in old French back to Latin to turn toward and hear and hear again. Keep a wary eye on it; know when to rest, to push, to struggle, and to compromise. And unlike with a friend, rejoice at its retreats and regret its arrivals. Nevertheless, I should be attentive. I should be respectful. I should, toward my body, be kind.
I also ought to pay some attention and consideration to the words of others when they point out that I may be doing things that make my condition better or worse. At the same time I shall be wary of where my information or the suggestions come from. I am responsible for deciding which foods I eat, whether it is how and where I breathe, or what and how I ingest—water, plant, or animal. And perhaps most importantly, the food of impressions—what sort of sensory impressions and ideas I open myself to and reflect upon.
There is no question that the day-to-day struggle to cope with chronic illness can be exhausting. We might often despair that the course of the illness can ever be stilled or any losses of strength or function regained. The attempt to stay even—physically, mentally, or emotionally—with a chronic disease may seem noble to us, yet it can be so futile.
What my illness means to me is central to the making and remaking of my illness experience. I realize that I am neither all-powerful nor helpless to cope with my illness. I can live so that my illness effects but does not control my life. I am responsible for defining and choosing how I wish to live within the boundaries that sooner or later we all will face.
Does what is happening to me offer some positive possibilities or am I completely defeated by the presence of illness? Is it a catastrophe that drastically limits my life possibilities? Or does it open up alternative ways of being and doing? Is it a door through which I discover or refresh for myself how to be more present, and as a result what seemed constricting opens upon a broader vista? It is possible to foster attitudes and take actions that make living with hardship easier? In a middle way between struggle and surrender, we recognize that a disease or disability is neither a judgment upon us nor a punishment. My chosen challenge is to live without from within.
Robert Shuman, Ed.D. is a psychotherapist with 40 years experience in Marblehead, MA, has been studying and working with consciousness traditions for nearly fifty years. Diagnosed with multiple sclerosis in 1982, he is the author of The Psychology of Chronic Illness: The Healing Work of Patients, Therapist and Families, Living with Multiple Sclerosis, and Chopping Wood, Spilling Water: Illness, Disability and Aging as Paths to Consciousness and Being. He can be contacted at email@example.com.