Illness has been a great teacher in my life though I do not claim ontological priority for suffering. This piece, circa January 1997, draws from an audio journal I kept during the mid-1990s in the depths of living with a brain injury. Some of this material was subsequently transcribed and published as Interleaves: Ruminations on Illness & Spiritual Life, Yoda 2011.
It is hard to communicate what it means to live with a chronic illness. I say I am tired beyond anything words can convey. A friend says she is exhausted and for a moment our lives appear to converge. I describe my symptoms. They are received like a grocery list might be. I wonder what it would take to provoke a response whether of disbelief or concern. It is not a question of wishing to evoke shock after years of what appears to others as interminable stasis. I do not expect my companions to be dismayed anew at every meeting. And I have become adept at modulating facts, at presenting them in a manageable, assimilable form.
What would it mean for our wor(l)ds to touch? When people meet they often seek to express some truth about themselves, about their experiences. Yet our conversations rarely seem to access that seam. For the most part communication has come to mean serial speech acts with little mutual engagement. Worlds that are disjunctive are brought to stand beside one another, separate but equal.
What does it mean for a well person to say, “I’m coming down with a cold and I need to rest”? What does it mean to me who has been too ill at times to move very far from my bed or couch? To me it suggests that a friend may be going to bed for the evening, reading a book, getting an early night. No, it turns out that she is taking a short nap and is able to keep her evening engagement! No one is to blame for this error in my perception. It is symptomatic of the inelasticity of language and of the polarity of the universes of the ill and the well. Both converge in the use of identical words to describe radically different orders of experience.
Increasingly, it feels as if I am stretching language to make tenuous – misleading - connections with the lives of those around me. For the words ‘fatigue,’ ‘exhaustion,’ ‘pain’ can have such different shades of content and meaning that two people who commiserate over headaches might only be able to do so because they share the fiction that one headache is rather like another. The dream of a common language obscures a paradox at the very heart of language. A word with a particular valence in one context is so completely transformed in another that it can lose its meaning in a general sense.
We seem to be aware of the poverty of language; to be striving in different ways to break through signification into sense-ibility. Take, for example, the compulsion of many to speak, to tell and retell the story of our lives, to seek out those who will listen, to turn to writers, musicians and artists to arouse ourselves out of numbness into feeling. Perhaps the search for stimulants and the desire to push the body beyond its physical limits is also a means to reach for the extra-linguistic; to jolt ourselves out of the padded cells in which we may have lived in order to not feel.
However, these very stratagems can also keep us captive to insensateness. The blizzard of words, the buzz of the double cappuccino, a seeming commitment to being busy, the physical exertion of relentless exercising: each may equally serve to keep us on the treadmill of escape, distracting us from all that we dare not, or cannot, feel. The choice is ours. Suffice it to say that in the end our decision to be present to life or to be missing-in-action will not solely depend on how we wrestle with the problem of signification.
The insurmountable challenge of conjuring the world of illness has raised the question of what it means to commune with fellow beings. If the intention is to communicate aspects of my experience, then clearly the language we share may or may not help. In the past I could trade ‘things done,’ but in the thick of illness events are few and the un-nameable an omnipresent and defining reality. If by meeting another I hope to be received as I am, I make myself vulnerable to the danger that I seek what humans can rarely give each other, unconditional acceptance and genuine comprehension. If companionship primarily serves to fend off the solitariness of illness, I would be betraying both host and guest. As I sit in my skeleton I wonder how balance might be restored to the dance of giving and receiving that is friendship; what will need to change within and without me so that the nature of human connection might be understood and experienced in simplicity and joy.