Imagine chronic illness is a way of being, a local world like deafness or blindness. Think of the stiff gait of a person with Parkinson’s, the labored breathing of one with emphysema, the explosive bursts of speech and twitches from those with Tourette’s, as dance, song, poetry. Illness moves to a different tempo than we hear in the world of health.


A peregrine, sacred to Apollo, archer god of plague and healing,
perches in my backyard on a branch
cold stripped bare of autumn flames,
unclasps his talons and, with a king’s ease,
lifts to the sky leaving me, cripple man, below,
rapt and tethered to my chair by spastic limbs
that flail on winter’s white skin surely as sly black ice
tricks and trips the feet of you quick walking folk.

As time wastes me and disease sapped powers slip away,
I fear the falcon’s swift stoop.
With wary eye and crystal tears, I wheel up the snow packed ramp
to my eyrie and make spells
to keep hooded sadness and savage symptoms at bay
from thirty years of weakness, aches, fevers, fatigue, pain,
missed connections between muscle and nerve.

I craft this poem as antidote to the hard nouns of science
and count on one thousand and one tales of transformation
to shield and sustain me
as myelin shreds and black holes tatter my brain.
I use myth and metaphor for medicine,
swallow fact and fiction, placebos and pills.

I am Hephaestus, twist footed gimp god,
as infant hurled into the sea by mother,
shame ravaged Hera. On bone thin legs
I limp from fire to forge to link fine nets of shimmering gold.
With smithy brawn I hammer swift Achilles’ bronze shield
exquisitely thin layered to snap heroes’ spears.
I emboss great cups for Zeus’ own lips
to touch and drink and shape jeweled cane
to strut my crooked self. In gleaming metal mirrors
my hobbled beauty glows. In the moment of telling you of the metamorphosis
of Actaeon, faultlessly astonished at Artemis’ virgin body
untouched by age or illness, wracked by her into quarry
savaged by his own hounds, I am he,
kin to monsters and shape shifters,
dreaming in passing of minotaurs and ghosts,
utterly changed, possessed by imagination.
Body and mind a labyrinth, being ill,
exhaling words, weaving phrases, poetry my daily bread
and blood to fight necessity. Do you hear my prayer?

The Muses /ˈmjuːzᵻz/ (Ancient Greek: Μοῦσαι Mousai; perhaps from the o-grade of the Proto-Indo-European root *men-“think”)[1] in Greek mythology are the goddesses inspiration of literature, science, and the arts. It was said that the winged horse Pegasus touched his hooves to the ground on Helicon, causing four sacred springs to burst forth, from which the muses were born.[10] Athena later tamed the horse and presented him to the muses. (Wikipedia)

Multiple sclerosis is my muse, a visitation from the gods to be shaped and reformed by my own wish and will. I imagine myself being kneaded in a slab of dough. The fingers of the baker touch me, inflicting a wound on my legs. My soul is being readied for the baking. Who is the baker? What is the bread? Or I picture my struggle with disease as if I were a farmer, constantly in close touch with local conditions, the terrain, my body on this particular day. The farmer cannot be sure when a hailstorm will pour down upon his crops or a drought might thankfully end. He knows that an infestation can plunder his fields and set upon him the even greater labor of saving what he gathers up.

Likewise, I do not know when an exacerbation, temporary or more lasting, could force me to change plans, abandon goals, or even let go of my dreams. The farmer, like one who is handicapped, works at a different pace from other men. He moves more slowly, and with greater vigilance. He notices a little more. Perhaps he is simply grateful for small successes or minor defeats. I imagine myself that man.

Or imagine that illness is loaded with information. We construe as symptoms the unwanted noise that impedes our aims. The marks and signs of illness are a sort of static that interferes with the organism’s prior acts and intentions. To perceive symptoms as signals and illness as information gives people a chance to break out of the narrow dichotomy of health and disease.

Complex systems are composed of unpredictable and chaotic processes that hide deeper structures of order. What appears to be either predictable or random has been shown to be neither. Instead, there is an order to disorder. Form and structure appear, only to disappear until reorganized into novel patterns once again. Psychologists recognize this process as one of insight and change. It is humbling to remind ourselves that we can predict neither.

One of the pleasures denied to many by illness is the feeling of flow, of “being in the groove,” that emerges out of full involvement in a physical effort. A chef moves with confident ease in his busy kitchen, his senses alive with the odors, tastes, colors, and textures of his cooking. A runner hits her stride, arms, legs, breathing, working in ensemble as a dynamic whole, each step planted and raised with rugged grace. Tennis opponents raise their abilities a notch as each reaches shots and delivers serves that neither is in the habit of making.

A spring day draws someone out to the backyard to rake, smell the freshening breeze, survey the landscape, clean chairs and tools, and finally to collapse, filled with exhilaration at jobs completed and next chores planned. The organism thrives on ordinary pleasures. The hope for such simple achievements, however, is easily consumed by the conditions and demands of illness.
If not replaced, the loss of these achievements can undermine some of the reasons we want to live. Fortunately, there is so much, by wheelchair or Skype, through books spoken or read, travel when possible or tales when not, and certainly family, friends, or readers to share and to be.


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