I am going to tell this story as I know it. Even now, it is strange to me.
Kathy Acker, "The Gift of Disease" ¹

The Tao of Disease ²
Cynthia Hogue

In 1995, I embarked on the path of chronic illness as everyone on that path does, much against my will. For two years prior to my diagnosis of Rheumatoid Arthritis, I developed a cognitive impairment from neurological symptoms not commonly associated with this disease. For a time, I disappeared into this neuropathy. There was no "me" left, just some "body" that could feel physiological but not emotional pain.

During those two years, the symptoms developed imperceptibly to everyone except those who knew me well. I lost the ability to read with any focus or write poetry. It grew difficult to teach. I would forget my books or lesson plans at home, and once in class, would forget what I had intended to say or had just said, often stopping dead mid-sentence. Once, while living in New Orleans, I drove across the Mississippi River because I forgot to get off at my exit in the city. As I found myself crossing the river, I could no longer remember why I had even gotten into the car. Another time, I arrived an hour late for my poetry reading because I'd gotten the time mixed up. People had waited, much to my delighted relief, until to my horror, I realized that I had forgotten all my poetry! I became very dyslexic with numbers as well as letters, and grew obsessive, prone to sudden rages or crying fits.

At last, I became almost completely inarticulate, losing my vocabulary, my capacity to produce and understand abstract thinking, and any ability to converse, for I could think of nothing to say. I could remember how to act socially, could remember to say the "niceties," but my mind was otherwise eerily blank. When I did speak, it would take me a long time to finish a sentence. I became indecisive and not only intellectually but also physically insecure. As half my head of hair fell out and I lost weight, I felt more and more unattractive. There were dark circles under my eyes. I was pale and gaunt. All these symptoms were accompanied by an unremitting fatigue so debilitating that no amount of sleep could touch it. Unable to read and write, bone-tired, I would drag myself to work and, once home, sit zombie-like for hours watching TV.

The many doctors I consulted didn't listen to me seriously, attributing my condition to stress rather than the precursor of illness. I was in a long-distance academic marriage, after all. Hoping to be a competitive candidate when my husband and I tried to get jobs together, I had been driving myself to finish a critical book while teaching in an active MFA program and directing a busy women's center. Get some rest and exercise, my gynecologist told me (I'd wondered if I had early menopause). Take in some fresh air this weekend, my GP said (I'd wondered if I had the beginnings of Alzheimer's). A tropical disease specialist thought it "interesting" that I had to describe dyslexia, for I had forgotten the word. My neuropathy was never clinically confirmed; from a scientific perspective it didn't exist.

My perspective was experiential, so the symptoms were all too real. That which I called myself, by which I identified myself as a writer, teacher, and wife, was disappearing, "emptied out," leaving what I can only now describe as a body-shell. I grew anti-social, reclusive, developing a "phone phobia." My husband would often call, as we had done since our careers had separated us a few years earlier, but I stopped answering the phone. Nor did I want to be touched when we were together. I couldn't explain it to him. I wanted to see no one, do nothing, go nowhere. I'd say I was dissociating, but it wasn't as if I had retreated into a fantasized life. I just wasn't there anymore. I wasn't anywhere. I would have been terrified, but there was no longer an "I" to be scared of losing.

I was entering years that would be so signified by pain that I recall them now with a still-symptomatic disassociation, a Dickinson-like "element of blank." Although eventually, I would be tested for everything from Lyme's Disease and Multiple Sclerosis (MS) to brain tumors, I had no sense of dread. Rather, there was a sort of weary fatalism, for I observed the inexorable force with which whatever it was had taken over my life, as if I were watching this happen to someone else. The first poem I was able to write about this experience came out almost in its current version, adopting the second person voice to track those sensations of both inexorability and alienation:

Body Scans

Almost comforting, cradling &
claustrophobic, the metal tube
surrounds you with
driving sound, head strapped in
so nothing moves. A voice
floats through the little mike:
"All right in there? Are you still
all right?" You're told half
an hour but it's fifty minutes.
Cold, you're hurtling
in space toward Mars,
chanting though you know
they hear you as they scan
your brain, deeper than the sea
& differing from God
as syllable from sound.
Later, when you huddle
on a table, they place
your feet, hands on a graph,
take pictures to see you
through & through.
Light cast from above
the machine marks
you with a cross,
a slanted star, a stained
glass window of a church.
"Don't breathe," they call,
& you don't.

Finally, when my neck and jaw froze, and an ankle and wrist swelled with joint inflammation, the symptoms were pronounced enough for me at last to be diagnosed with something that had a name: Rheumatoid Arthritis. RA is a painful and often crippling inflammation of the joints with no known cause or cure. I was put on medication that soon began to heal the neuropathy. In time, it halted the RA as well, although initially, I descended into the physical RA symptoms, a year in which I lived in what felt like an eternal present and presence of physical pain. I could not think about whether I might be permanently disabled by a deforming disease that destroys all the joints in the body. It was enough to manage the chronic pain on a daily basis, for I could no longer move except with difficulty. Even the simplest task-tying a shoe, buttoning a blouse, walking up a flight of stairs-took a long time to complete. Going down two flights of stairs into the cellar with a basket of wash was a near-herculean job. As I withdrew into the isolation of chronic illness, my fifteen-year marriage fell apart, and slowly, I began to take up a new and much-changed life.

All the orienting markers by which I had known myself were dissolving. As I no longer had any sense of myself except through a few labels (which had once seemed so internalized but were revealed to me as external labels only-"wife," "teacher," "poet"), I found myself humbled. Diagnosed with the same illness as Adrienne Rich, I had the uncanny experience of having studied her work closely for some years for a book chapter and subsequent critical essays, without ever having noticed her representations of illness and pain. Now, I understood firsthand her assertion that poetic language has the capacity "to engage with states that themselves would deprive us of language and reduce us to passive sufferers" (What Is Found There 10), myself deprived of language, reduced to a passive suffering that I fought. Learning to live with a level of physical pain which, in retrospect, is as hard to imagine as it is to describe, I realized what a particular look I had seen on Rich's face at her readings meant: chronic pain. I came fully to appreciate what this poet has given us by the example that she has set of a fully-engaged and passionately ethical life in spite-or because-of her illness.

Like Rich, I had lost my physical well being at the same time as I became despairingly aware of the greater pain of others in the world. As I had to let go of
all hopes of normal action for a time, I also had to release a vanished self who could move without effort or thought. The process became for me, in the way of other traumatizing experiences, transformative. Call it an "accidental tourist's" journey into humility and selflessness (because this transitory state was an accident due
to illness, not brought on by a moral choice). For two years, as I say, there was simply no longer a "self" to feel and express. As the disease's progress was halted, and I began to integrate what had happened to me, this experience of a humbled no-self became profoundly-if hesitantly, stumblingly-spiritual, opening to me, as if in a vision, another possibility of being:

In a Mute Season

Questions rail along the field
where winter wheat lies hidden
in snow. (We lie to justify
indefensible behavior, to protect
unprotectable innocence, inhaling
and exhaling with an evenness
of spirit to which we aspire.)
Who calls the sky gray?
or the seasons unsurvivable?

I visit doctors because
my body drives me to them,
beyond my dictates. Ailing,
I am healing before
my mind understands
that the phenomenology of pain
harbors words which refuse
syntax and order, predictable,
eventual inevitability,

until I grasp that order
eludes us, dispersing,
a wall of fog we drive through,
so frugal of speed, spendthrifts
of time. To feel alone is merely
the mind's last defense-
a physiological white-out-
from the spirit's largesse.

****

In many spiritual traditions, this state of transcending the ego is actively sought through meditation (for example, in Buddhism) or contemplation (for example,
in Christianity). Writing of the contemplative Christian tradition in The Path to
No-Self, Bernadette Roberts says:

I mark the definitive entrance into the Dark Night of the Spirit as the first phase of the unitive life. Here begins the cauterizing, the burning-through to the deepest center of being, which is painful and shattering to all
aspects of the self. (9)

The change in our consciousness brought about by this Night can be dramatic, seen in how we approach others, as well as in our sense of God. We may move from an ego-absorption into the possibility of a community-minded consciousness. Through such a move, we can discover a capacity within us to release our tendency to judge others, learning to act with more love, compassion, and forgiveness.

Once in treatment, when "I" felt "myself" coming back, it was not immediately clear to me that I had returned changed. But I was changed, and as my life changed, I became aware that I was no longer the "I" who had been "me"-not least, because Rheumatoid Arthritis is chronic. As Nancy Mairs, suffering from Multiple Sclerosis, recounts in Waist High in the World, sometimes she is asked, "Who would I be if I didn't have MS?" And she responds, "Literally no body. I am not 'Nancy + MS,' and no simple subtraction can render me whole" (8). In my own case, I was asked recently whether I "thought of myself as ill." "Yes," I said, "and no," thoroughly confusing the person who asked me the question.

Let me explain. Because the treatment I received soon after I was diagnosed arrested the disease, my body sustained no permanent damage. I had the blessed luck to happen, upon moving from New Orleans to Pennsylvania, immediately to find a rheumatologist who was both a superb scientist and a good doctor. He listened to me carefully before he began his examination. I was being heard at last. And so, with a sense of a great burden lifting from my shoulders, I listened to him. Although not in complete remission, I am no longer in chronic pain. I am so seemingly able-bodied, moreover, that when I ran into a long-term and very disabled RA sufferer whom I had known remotely as a dean at my old university, she asked me to share my regimen with her. As she hobbled away with her cane, she turned back to me hopefully. "What goddess sent you?" she called. And what goddess touched me? I wondered. Every day, I am thankful that I sustained no brain or joint damage. Yet I cannot return to my pre-RA self, or the consciousness of someone who has not experienced a serious illness, for that experience is now an integral part of who I am.

When the disease was very painful and before the neuropathy abated, I began to notice that I was seeing others as if for the first time. It was sometimes so hard to understand what people were saying that I was forced to listen to others more attentively than I had tended to do before-whether because I was busy and inattentive, or wanted to talk myself. In doing so, I discovered experientially what my rheumatologist had already modeled for me. Termed in conflict resolution "centered listening," it is a way of listening so attentively that one conveys deep respect for others. I began to hear people wholly, in their human-ness. Many things touched me profoundly in this new awareness. Emotionally vulnerable following my divorce, and physically fragile, I was forced to accept help from others. I became keenly aware of people's small as well as large acts of kindness, their hesitant
and courageous revelations of themselves, their insecurities, their tender fears
and generosity.

I began opening to all kinds of people-some whom I would not have respected or been open to, or would have previously judged or feared. People who would have intimidated me formerly no longer did. Because I had been intellectually humbled by the loss of my ability to read, write, and speak proficiently, I had been forced to work on releasing that aspect of ego. I was compelled to appreciate others' gifts, and at the same time, practice accepting who I was. This practice gave me, in turn, an intimation of what true, moral humility (as opposed to modesty) might feel like. John Tarrant, speaking of the value of humility in The Light Inside the Dark, writes:

Humility assumes we are willing to work with adverse fate. It is close to the dark, accepting that from time to time we go down into night where the world may labor to change us, and that our goodness as human beings depends on accepting this descent. (164-65)

Humbled by the accident of my illness, trying to accept what was happening to me, I was finding my way in that unfamiliar territory. I was learning to honor others, and to listen to them more deeply, sometimes beyond or between the actual words they spoke.

As a poet, I had long contemplated philosopher Julia Kristeva's notion of an ethical art. She writes that an artistic practice is ethical when it dissolves narcissism (or ego)-that is, when art shatters an other-denying self-absorption. ³ My illness led me to understand the profoundness of this insight. As artists, when we are able to convey another's experience without making that other person an alien object of analysis, we are discovering an ethical artistic practice. When we are able to take in, to witness, to hear another's experience without necessarily having to insert the self-as for instance, by comparing ourselves as better or worse than the other person-we are beginning to approach human relations as profoundly mutual rather than hierarchical.

In order to teach during that time, I had to let go of my aspirations and ambitions. There was no way around the fact that I was in no condition to fulfill them. I had to accept that fact, be at peace with it, and learn to celebrate what others-to whom my old self would have gotten lost in feeling inferior-were able to contribute, contributions that I could no longer make. I learned to draw more fully upon my students' abilities, and to accept that I could not always be the "authority." I could no longer speak with my former professorial confidence. Especially as a creative writing teacher, I tried to cultivate a "centered listening" in order to acknowledge my students' humanity (not simply for the right answer), and ventured to speak to them more from the heart. It felt-and feels-risky, because I'm still both learning to handle vulnerability and adjusting to not being able to hide behind a facade of impersonal authority.

As a writer, in order to write at all during this time (and for a long time thereafter), I had literally to "inhabit" the words of others. I learned to adapt the research methods of quotation and collage that I had studied as a critic. Here, too, I was lucky, for I had studied formal models that I could adopt. Quotation and collage are, after all, important aspects of Modernist formal innovation. I used as models the works of a Modernist poet like Marianne Moore, as well as the poems of a contemporary poet like Adrienne Rich, in trying to articulate that disassociated self capable of identifying with others' experiences, of "blurring the edges" (the phrase is Rich's) between my own and others' pain. Such a practice becomes-for both writer and reader-an exercise in compassionate identification with another, and a transcendence of attachment to self-interest, self-absorption. In learning
how to write when I could not write-at least, as I had written before-I discovered that I was also finding a different way to be in the world. I am in process, still finding my way.

Hence the title of this essay-the Tao (the way or path) of disease. The Night of illness has caused me to surrender to the journey on this path. For me, as for others on this path, there's no turning back, but there are stopping places along the road-the rock of regret, the bench of denial, the bridge of bitterness, the sorrow stump, the judgment gorge. I had a dream during this time that was, like all dreams, both story and symbol. All that it condensed into the image of a literal path is strange to me even now:

I am hiking with my husband and lose him. The path we were on had been like an avenue, wide and tree-lined, but when I turn back to find him, the trees are all tangled up top, bent over and misshapen, though at ground level they seem as evenly spaced as before. Suddenly, I do not know where I am and where my husband is. There is a trail that goes up a grassy hill, which is treeless except for one old oak tree at the top, huge and very green. The sky is a bright blue around the green oak. It looks like a beautiful prospect up on the hill, but I do not want to make the climb if my husband isn't there. Then, I find our original path and can see him at the car in the parking lot. The path we'd been on is now small, and though I start to take it back, I do not reach him before I wake up.

Although I couldn't read it at the time, this dream gave me a clear picture of the juncture I was at. Contracting a serious illness brings such profound changes that there is no going back to the path one had been on. I tried. But what had seemed wide was suddenly small. What had been an open and tree-lined avenue was fretted over with emotional tangles shutting out the light. The best prospect, though beautiful, was uphill and lonely. Each of us faces such junctures and dwells at such stopping places on the path. The hardest for me were, in the years following my illness and divorce, the sorrow stump and the judgment gorge. When I return to them, as I do from time to time, I still have to remind myself how blessed I've been to have had the luxury of time to integrate the experience of Night that illness brings on.

For some of us, however, the disease takes our bodies before our minds can fully take in what is happening to us. We're interrupted in the integrative process. A friend of mine died in his late forties some years ago from cancer. He was diagnosed in the late fall and died over Christmas, feeling so betrayed by life that he would not let go of his fury. He refused to see his still-healthy friends before he died. He did not have enough time to travel the whole way of his grief. Refusing to cross the bridge of bitterness, that is where he died on the path. At the time, shocked and saddened, I did not understand this refusal.

But now at forty-eight, exactly the age that my friend was when he died, I see how long it has taken me even to begin to integrate the experience of chronic illness, and feel how unprepared I would still be to face a mortal illness. In his bitter anger, my friend found the strength within himself to face death so quickly. He could not choose not to get cancer-that was beyond his control. He could only choose how he walked on that road once he found himself on it. The process of integration takes time, time that he did not have. He was angry about dying so young. Rather than deny that feeling, he acknowledged it, and so he stomped his feet in fury. As Dylan Thomas urged of his father, so said my friend: "Do not go gentle into that good night. / Rage, rage against the dying of the light."

Many speak of illness and crisis as a "gift," which awakens us to our mortality in ways that we haven't been conscious of before. But this gift still carries with it an intimation of its etymological roots in the Old Norse and Germanic word for poison, giftur. Evident in the linguistic closeness of our English "poison" and "potion," for example, is that same double meaning buried in gift of something that could heal or kill us. The gift can poison us with bitterness, but bitterness is also therapeutic. It caused my friend, for example, to find within himself the angry courage that he needed to confront, so unexpectedly, the end of his life. Analogous to the way in which venom is an antidote for snakebite or a trace of the infecting organism is a vaccine against a disease, moreover, that struggle with bitterness can be the very effort that helps us to change our perspective. The "poison" of illness can be the "potion" that sends us on the road of self-transformation. Kathy Acker wrote in "The Gift of Disease" that in the process of searching for ways to cure her cancer, she took a " 'leap of faith' to believe that I could be healed and that I could heal myself." Because she died of the cancer two years later, it would be easy to say that she failed in this quest.

But before her death, she made two significant paradigm shifts, which transformed her. She moved from seeing doctors as those who cure us to seeing them as facilitators and teachers, creating not only a medical relationship, but also a spiritual one. This spirituality also transformed her view of our bodies, which she no longer saw as solely physical entities. Her disease catalyzed her entry into "the school of the body," which is, of course, "the school of the self":

I thought I was, unwillingly, confronting cancer; I was confronting myself. I no longer have cancer. To heal in oneself is to begin to heal the self[,] which is always whole.

To arrive at the insight that the wounded self, the diseased or traumatized being, is always, already whole, is not to reunify the sense of self shattered by the experience of illness. Rather, it is to develop a capacity for true integrity-"the inner sense of wholeness and strength that arises out of our honesty with ourselves"-of which John Tarrant speaks in The Light Inside the Dark. Having transcended itself, the self has been re-formed. When the experience of illness becomes a Tao in our minds (though no one would choose it if given the choice), then we can proceed over the bridge of bitterness, past the sorrow stump, and around the judgment gorge, along this particular path-for it is only a way, not the way-of insight and inner knowledge. Then illness has become truly a gift, changing our lives deeply for the rest of our days.

****

Here is a journal entry that I wrote in 1991, four years before I was diagnosed:

It's the next to last day of my summer in Los Angeles. My friend Anna and I went whale watching today. Blue whales have returned to the California coast, following the plankton washed north of Mexico by warm winds. Hundreds of leaping bottlenose dolphins with their young, humpback whales spouting in the distance, orcas, and three sightings of the largest mammal on earth, the blue whale. One with a scarred fin trolled alongside us, displaying himself. He was almost as large as our boat, and so close that he could have flipped it. Abreast of us, he arced sideways to dive, his great fluke reaching straight into the air. Then he turned around and performed the whole display again. We shared him with another boat for over an hour, the whale
crisscrossing between us.

The captain insisted he'd never seen anything like it in twenty years of sailing. Our tickets were a gift from my sister, a news producer who was out yesterday with a crew to film the blue whales' return to the California coast. They saw only the silhouettes of a few spouts in the distance. Her boat was filled with children who kept stealing the cameraman's equipment. It was very rough. Everyone got sick. Today, the sea was calm. We felt the day in our bones. At its end, Anna gave me a Native American card reading. These cards are a deck of "animal spirits" that reflect Native American myths. The turkey, one of the most powerful cards, was the outcome of my reading: after much hardship, a great gift.

Because I am a poet, I thought at the time ambitiously of success measured in outward and visible form-maybe a book prize or a Guggenheim! And because my "biological clock" was ticking as I turned forty that year, I had also hoped, after visits to an infertility clinic, that my husband and I would at last be able to conceive a child.

It is five years after my diagnosis. The century has turned. I am walking down the street in the town where I now live, childless and divorced. I have made good friends here. It is spring and the crocuses and northern magnolia are beginning to bloom. The buds on trees are still tight, chartreuse-green. I stop dead, for I at last realize that this "great gift," which my friend Anna had prophesied for me so long ago, was my illness.
 
 

1
Acker's narrative was posthumously published. My thanks to Nicole Cooley for alerting me to this essay, as well as sharing with me the manuscript of her own forthcoming critical work on Acker. See Nicole Cooley, "Painful Bodies: Kathy Acker's Last Texts," in "We Who 'Love to Be Astonished' ": Experimental Women's Writing and Performance Poetics, ed. Laura Hinton and Cynthia Hogue (forthcoming U of AL P, 2001).

2
I would like to thank Julie Vandivere, Kirpal Gordon, Adrian Oktenberg, two anonymous readers for their helpful comments, and the editor of this journal, Fred Moramarco, for feedback and support that helped me to complete this essay.

3
See Julia Kristeva, Revolution in Poetic Language, 232-33.
 

Works Cited

Acker, Kathy. "The Gift of Disease." Essay published electronically at //acker.thehub.com.au/gift//, 1998.

Kristeva, Julia. Revolution in Poetic Language. Trans. Margaret Waller. New York: Columbia UP, 1984.

Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled. Boston, MA: Beacon P, 1996.

Rich, Adrienne. What Is Found There. New York: Norton, 1993. Roberts, Bernadette. The Path to No-Self: Life at the Center. Albany, NY: SUNY P, 1991.

Tarrant, John. The Light Inside the Dark: Zen, Soul, and the Spiritual Life. New York: HarperCollins, 1998.