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Speechless in a powerless body, he strains to signal to the world.


The other day, I happened to glance into a mirror for the first time in, several weeks, and saw my face.

We who can no longer shave ourselves or brush our own hair have little use for such accessories to vanity. But I looked for a few seconds at my reflected image, and was rather pleasantly surprised to find the familiar features intact.

The face was thinner, surely, than it had been a year previously. (Those 20 pounds that I lost had to come from somewhere.) The eyes appeared a bit sunken, the corners of the mouth a trifle tri·fle  
n.
1. Something of little importance or value.

2. A small amount; a jot.

3. A dessert typically consisting of plain or sponge cake soaked in sherry, rum, or brandy and topped with layers of jam or jelly,
 slack, and the entire assemblage could have stood a couple of days in bright sunshine. But it was unmistakably my face, and I found this fact somehow reassuring.

What image I had expected to see in the glass, I don't know Don't know (DK, DKed)

"Don't know the trade." A Street expression used whenever one party lacks knowledge of a trade or receives conflicting instructions from the other party.
 - perhaps one of those twisted, inside-out Picasso faces, or the haunting, wasted visage of Dorian Gray This article or section needs copy editing for grammar, style, cohesion, tone and/or spelling.
You can assist by [ editing it] now.
. Either might have seemed an apt reflection of this writer, voice silenced and limbs sapped of their strength by Lou Gehrig's disease Lou Geh·rig's disease
n.
See amyotrophic lateral sclerosis.
. Instead, I fancied that I looked nearly normal, even as I knew that this malady malady /mal·a·dy/ (-ah-de) disease.

mal·a·dy
n.
A disease, disorder, or ailment.



malady

a disease or illness.
 was annihilating an·ni·hi·late  
v. an·ni·hi·lat·ed, an·ni·hi·lat·ing, an·ni·hi·lates

v.tr.
1.
a. To destroy completely: The naval force was annihilated during the attack.
 my motor nerve motor nerve
n.
An efferent nerve conveying an impulse that excites muscular contraction.


Motor nerve
Motor or efferent nerve cells carry impulses from the brain to muscle or organ tissue.
 cells by the millions.

Illness of any serious sort bends our vision, realigns our mind. Nothing is as it was. Whatever the stimulus - pain, fever, drug-induced haze or the hard-edged confrontation with one's own mortality - the sick person of necessity regards the world through different lenses than do those who are well.

In my own case, infirmity's visitation induced a fresh outlook toward many fellow humans, and I remember the first time this happened. It was nearly Christmas of 1992. I had just received confirmed diagnosis of Lou Gehrig's disease, an incurable neuromuscular neuromuscular /neu·ro·mus·cu·lar/ (-mus´ku-ler) pertaining to nerves and muscles, or to the relationship between them.

neu·ro·mus·cu·lar
adj.
1.
 disorder, and was at that point getting around with the aid of a cane. I had never especially noticed cane users as such, but on this particular afternoon, driving with a son around downtown Providence, I spotted five cane-brandishing pedestrians within the space of a few blocks. I felt the tug of a kinship bond.

"My," I said to my son, "there certainly are a lot of us out today."

This recognition had several facets. For one thing, my newly alerted eye was spotting cane carriers as people who were just a bit unusual (because of the cane) and therefore deserving of special attention. A cane or crutch crutch (kruch) a staff, ordinarily extending from the armpit to the ground, with a support for the hand and usually also for the arm or axilla; used to support the body in walking.

crutch
n.
 once might have been seen as a symbol of weakness leading to invisibility. (Shh SHH Sonic Hedgehog
SHH Super Hero Hype
SHH Sacred Heart Hospital (Allentown, Pennsylvania)
SHH Hickory Shad (FAO fish species code)
SHH Sonic Hedge Hog
SHH Shishmaref, Alaska
! Something's wrong with that guy! See him limp! Why, he might even be contagious! We'd best stay away!) After using a cane myself, though, my fellow caners came to appear as just regular folks who had recently had a bad day with an ankle injury or whatever. It was okay for them to be out in public on their own. Some of them were probably even nice.

Gazing at the cane contingent, I further realized that I was now numbered among them. Hey, lookie here! I've got a cane, too! I even managed a twinge twinge
n.
A sharp, sudden physical pain.

v.
To cause to feel a sharp pain.
 of pride at this new kernel of awareness, although the honor was one that I could have cheerfully foregone fore·gone
v.
Past participle of forego1.

adj.
Having gone before; previous.

Usage Note: The word foregone has recently developed a new meaning as a truncation of the phrase
.

Several weeks into winter, as I was negotiating a treacherous icy downtown sidewalk with the help of my cane, I learned that this distinction had its downside. A man of middle years and motley clothes approached me, glanced at the cane and at me, then bawled in my face:

"Move it, cripple freak!"

This got my attention briefly, and I quickly understood that my illness has propelled me into the ranks of the incapacitated in·ca·pac·i·tate  
tr.v. in·ca·pac·i·tat·ed, in·ca·pac·i·tat·ing, in·ca·pac·i·tates
1. To deprive of strength or ability; disable.

2. To make legally ineligible; disqualify.
, the disabled - all those whose circumstances have rendered them less than physically whole. Members of this large aggregation - one estimate places the number of disabled Americans at 40 million - are not often addressed as I was that winter afternoon. Until recently, however, handicapped people encountered more damaging treatment in the form of job discrimination, limited access to public buildings and, across much of the population, a general indifference to their needs.

Now, many of those needs are being addressed; and the healthy majority has learned that, with a bit of help, many disabled people function well and lead rich lives. Yet folk myths die hard. The idea that many of the disabled are incompetent or severely retarded seems hard to dispel, as I discovered during a recent hospital stay.

I was in for minor surgery, a few days only. Most of the nurses learned quickly that I could neither move nor speak, and were really quite wonderful in working out eye signals so I could communicate. On the last night of my stay, however, I was visited by a young nurse and an aide who hadn't gotten the word. They tended to their tidying routine, and then there ensued several minutes of blocked communication between the nurses and me. All I could really do was blink my eyes and murmur an unvoiced "hum". (My family says that I sound like a space alien from Star Wars.) The room was warm; when I tried to get the nurses to turn on a small table fan, I got no response. I signaled that I wanted them to leave the bed elevated for sleeping; they cranked me down flat. When I indicated that I would prefer the covers left off, the two tucked them snugly around my shoulders. And, when I tried to get the wall light left on, a nurse turned it off.

Trivial matters certainly, and no harm was done. But, as the departing nurses stood in the half-light of the doorway, gazing blankly at me as I tried to mouth "please," I caught a glimpse of what it must be to have truly no voice at all in today's world - to be immobilized, powerless, invisible. You strain and ache and try to reach out, in the hope of being understood or at least heard. But then you meet deafness, or a refusal to listen, and you have learned a smidgeon more about things that matter.

NCEW NCEW National Conference of Editorial Writers  life member Brian Dickinson Brian Dickinson (born 1961 in Guelph, Ontario, Canada) is a two-time Juno Award-winning pianist. Dickinson's CD In Transition was chosen as Best Jazz Recording in 1991, and he was named 1993 Composer of the Year by The Jazz Report.  is an editorial columnist for the Providence Journal Bulletin.
COPYRIGHT 1995 National Conference of Editorial Writers
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1995, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Title Annotation:Loou Gehrig's disease
Author:Dickinson, Brian
Publication:The Masthead
Date:Mar 22, 1995
Words:1020
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