Once Upon a Time

Once upon a time,
a car ran a light.
My neck, once "normal",
now shakes, twitches, pulls with might.

A woman gazes in a mirror,
to admire a lovely face.
One she can recognize,
as time ages it with grace.

I am an out of control puppet.
An evil master in charge of strings.
Frustrated, ugly, undesirable;
I feel like something from Halloween.

Contact lenses, now a battle,
my eyes red and weary.
Eye liner, a mascara wand;
no beauty, painful weaponry.

My hair, wash and wear,
lopsided after a painful cut.
I owed the stylist double
for her patience and my trust.

Blouses once worn to attract,
earrings to sparkle as they sway.
Turtlenecks now cover my neck.
Precious jewelry put away.

Going to a movie theater,
now Popcorn Adventureland.
Is it right or left best for my neck?
Often, I trip on unfriendly fans.

My neck rules my life
morning, noon and night.
Prop my head to read,
lay on the couch for TV.

A rendezvous in a restaurant
means a booth and food plan.
If you could cut your meat,
it nose dives into someone's seat.

You begin to watch people
from a recliner through a window.
The old you is a memory.
Pain rules, your "act" becomes solo.

Everything seems a struggle
until you find you aren't alone.
The Internet or a pamphlet
finds your way to a phone.

I found another person
whose body wasn't straight.
I rejoiced to discover a friend.
Yet, cried for their painful fate.

I have hope and help now,
a neurologist with Botox injections.
A name for a brain disorder,
not strain, stress, or total rejection.

Dystonia is not terminal cancer,
a child with no nose is a tragedy.
So you learn skills, stop grieving,
gain acceptance and rationality.

Outer beauty is superficial.
Inner strength arrives to stay.
Love comes back to you
when you give it away.



By Kathie Stehr



Dystonia is a neurological disorder, similar to Parkinson's disease. There are many types of dystonia. It is painful, disfiguring, and causes problems with activities of daily living. Many children have a genetic (DYT1)type of this and they are wheelchair bound with spastic muscles and constant pain. If they can handle this, surely I can. Scientists are not sure what causes it but sometimes it will appear after a fall, car accident etc. It can happen at anytime in life and doesn't go away.
I am sure that you thought Botox was only for wrinkles, neurologists give twenty injections in your neck, eyelids, vocal cords, etc. It feels like bee stings but it gives relief for about three months. Deep Brain Stimulation is now used routinely ro go into the basal ganglia of the brain to repair the overactive areas.