Once Upon a Time

Once upon a time, a car ran a light.
My neck, once "normal",
began to shake, pull and twitch.
Dystonia, a brain disorder, might ruin my life.

Every woman longs to be Cinderella,
to gaze in a mirror, admire her lovely face.
One she can recognize,
as time ages it with grace.

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

Forget contact lenses, 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 time and my trust.

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

Going to the theater is
now Adventureland.
Is it right or left side for my neck?
Popcorn and I tumble to greet 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 dived into a 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.

When 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 armed with Botox
a name for a brain disorder
not "stress, nerves, or we aren't sure".

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

Remember that woman in the mirror?
Now she knows about real beauty.
Her eyes shine with compassion.
Her smile is given with love.

Outer beauty is superficial.
inner beauty dwells in your heart.
Love comes back to you
when you give it away.



By Kathie Stehr
2012


Many children have a type of this and they are wheelchair bound with spastic muscles and constant pain. If they can handle this, surely I can.
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.