Dystonia: A Definition for a Friend P II

Dystonia: A definition for a friend P II

"No," she said quietly again,
"tell me of this thing - this
Dystonia and what it is to You."
then waited patiently
while he considered.

He could tell
of ignorance in the professions;
countless doctors, teachers,
and councilors who all spouted
numerous variations of "it is all
in your head, nothing more. Stop

wanting

to be disabled,
and you will not be." Or the genius
who thought a steel rod
down the spine a good idea,
or the need of men to experiment
so great they could not hide
the gleeful rubbing of hands
upon entering the rooms of science.

Of the myriad of tests
now thought too savage,
barbaric, to administer
to any patient be they seven,
or seventy.

The medicines
which might offer some comfort -
but could irreversible destroy
a nine-year old liver
in fifty or sixty years - or lead
to an auditory, hallucinatory, psychotic
snap which made his reality
the real for a brief glimmer.

- but it would not suffice.

Should we talk
of the continual need of the religious
to ease their own guilts
by dragging a child, carrying him
in cradled arms and on backs
to the front of entire congregations
for aged clergy to drool, to pray,
to poor oils over?

And of the same continual need
of the religious to accept and understand
what they could not change -
to spend hours pontificating
that the greater he suffered,
the more god loved him -
that he was an example
to all humanity of god's infinite
patience and love, how great the reward
would be in the life that was to come -
and how they envied him;
how grateful he ought to be.

- but it would not suffice.

He could tell her of schoolmates
who thought nothing
of the slow twisting, curling,
rending backward and to the left
as he leaned further forward, lower,
until at last he chased them from class
to class with walkers, crutches,
then a wheeled board propelled
by the right foot - later
a wheelchair.

Or of the opposite. When teenagers
drive by leaning out windows
of passing cars spitting unprintable
insults to look big and strong
to girlfriends and fellow boys
in the face of their fear
of their own mortality
while family friends bring diets
and breathing techniques
sure to conquer any
disability?

- but it would not suffice.

Finally, we could converse
about a man so absorbed
by his own guilts, insecurities,
and perceived inadequacies
that a trip was made to New York
City so one hundred bishops
could salivate, and pray,
over the boy.

Who one minute viciously
berated police and teachers,
then did far more in the darkening
light that was the day. Of a tiger
of a woman who tirelessly fought
for rights, for education and dignity -
who only ever looked at him

in sadness -
and love -
and understanding -

the further inward
he slid.

Of the human being turned black
hole who slowly consumed himself
collapsing on and in until,
drunk beyond intoxication he spat
hatred and venom at the world
and watched a sister go mad
from lack of attention; abandoning
others for the safety
of drink,
and words,
and books.

- but it would not suffice.

It will not suffice
here my Friend because Dystonia
has been,
and was,
and is,
all of this in my life.

It will not suffice
here because Dystonia
is none
of what I am -
and it is all that

I am.

_{(from a Black Hole to A Friend :: 09-05-2009)}