A Day In My Life

Usher Syndrome affects my life
In so many frustrating ways.
I do not wish this on anyone.
I remember better days.

Wiping tables-I knock over a “forgotten” cup.
Something easily avoided had I looked there.
I have more mess to clean up than before.
Sighing, all I can do is shrug and stare.

I would bump into someone at the store
Immediately to the person I’d apologize.
Embarrassed, I find it was just a display.
Did someone see me talking to it?, I’d agonize.

Matching a dingy yellow sock with a pale pink
Or navy with black, my colors are affected.
I can laugh over this, but inside I am crying.
With Usher, my life is becoming infected.

With the help of hearing aids, I can hear.
The phone ringing, a child crying...
But only if I am in the same room.
To understand some voices is trying.

Periodically in my eyes, the swirling lights...
One right after the other, arcs flash brightly
Circling ‘round and ‘round, then fading out,
Replaced by the next one...I shut my eyes tightly.

Gradually, my world is becoming shadowy.
My peripheral vision disappear in a void.
There’s nothingness, a thick impenetrable plastic
Obscuring what once was there, now a void.

Called tunnel vision; I can only see straight ahead.
I can sense movement in the farthest corners of my eyes.
A little at a time, it, too, will die off, ever so slowly.
What’s my purpose for this? I gaze questionly at the skies.

A brave front I show the world, trying to be normal...
Partially hearing and sighted: I have vanity issues.
I can admit I cannot hear well; I am used to it.
I try to hide my vision problem, but sanity ensues.

It is easier to let go and admit a visual problem
Than to look like you aren’t paying attention.
People are more understanding when it’s clear
That my “clumsiness” has an excuse, a reason.

It is still not easy…you take it one day at a time.
Admittedly, one day is better than another.
It fluctuates continuously, yet amazingly I adjust.
But it’s easier when we work together.


Written by Shari © 2007