Mr Kurtzke's Scale

Zero: how does it feel to be a zero? You see I forgot.

I knew it once, but time marches on, and I do not.

One, two, three, four, five: I skipped them all

and landed hard on 5.5, not my first or only fall

Six, six was hard, unforgiving, the purchase of my cane

kept me upright, steady, and brought me a new and lasting pain

6.5 a slow slide from 6, hardly noticed until my shopping bag

included crutches and with each step my left foot began to drag

from 6.5 to 8.5 was but a weekend's work, numb from tits to toe

there's no fighting it, I cannot win my daily battle with this foe

that brought me 8 months of bed-rest, personal care and humiliation

time to contemplate ten, the end, our final destination

on this scale designed to measure the depth of our despair

of damage wrought, of functions lost and lost beyond repair.

But what of joy, determination, of a life well lived, in the face

of such overwhelming odds? On your scale they have no place.

Now by some neurological fluke I'm back at 6.5 again

and urged by fate I sit and contemplate the meaning of that ten

that last mark, that final place where all hearts beat no more,

I wonder when I come to ten, will I see a dim and distant shore?

I find I cannot focus, or keep my mind upon that final mark, that final

beat, it veers to seriphim, cherubim, archangels, gabriel, rapheal, micheal, uriel

I cannot imagine what it is not to be, to not see my grandson grow old,

to never know the days must-have gadget, for my story to be all told

we who are marked by death (8.5 on a scale from 1 to 10)

are encouraged to make our plans: living wills, nil by mouth, for when

we find ourselves sliding from 9 (helpless bed patient), down feeding tubes past

ventilators to that point of no return to which we all must come at last

but I do not, I refuse, decline, plan instead to wing it, take it day by day

live in the moment, two fingers up to death, not let it hold sway

until I'm done, not accept death as my orderly ordained carefully planned lot

to some it looks like dying, to me it's living since it's all I've got

It is death itself I fear, the blank, unutterable, grasping finality of death

Author Note: I wrote this poem in response to the Expanded Disability Status Scale (EDSS) devised by John F Kurtzke, to assess disability in MS.

Kurtzke JF (1983). "Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS)". Neurology 33 (11): 1444–52.