My Tucson: Neither judge a book by its cover nor me by my outward appearanceby Valerie Golembiewski on Feb. 05, 2008, under Opinion
I is not a retard.
My husband jokingly wants to make me a sign like that to wear around my neck because after two-plus years of facial paralysis, I am treated with pity, shame and scorn in public.
No, I did not have a stroke.
I had undiagnosed shingles in my left ear that evolved into Ramsay Hunt syndrome, rendering me paralyzed on the left side of my head, face and neck.
As a result, I have diminished hearing and sight on that side. I have to drink through a straw and have my food cut into small pieces so I don’t choke while swallowing.
My nose runs, my eye waters, my mouth is twisted so I have a perpetual smile.
Strangers smile at me because they think I’m smiling at them. That could be good or bad.
Either they think I’m mentally deficient and someone to be humored, or they think I am a smart aleck who is mocking them.
I also experience vertigo due to a balance disturbance.
The most frustrating feature of this condition for me is my speech.
It is slow, slurred and stilted, and I have developed an accent of sorts. People often think I’m German and ask me where I’m from.
Sometimes, I stutter due to a condition called dysphasia, which doesn’t affect thinking or intelligence, just language.
Here’s an example of an experience I endured while at a local used bookstore during a book signing.
Since I can no longer drive, my husband takes me everywhere.
He was with me but, at my request, left me to look at the books on my own while he waited in the hallway, ready to help if I lost my balance.
There were several authors in attendance, all promoting their books about southern Arizona.
As I circled the room, I had to balance myself by reaching out to hold onto tables and chairs.
I found one book I liked and asked the author to autograph it for me. I imagine my facial expression and slow speech caused her to think of me as “special.”
She asked in a VERY LOUD voice, “Who do you want it made it out to, dear?”
I reached into my purse and drew out a business card with my name and contact information and handed it to her.
She very slowly and loudly said everything she was writing down, “To Valerie . . . .” Then she made a show of pointing me in the direction of the table where payments were accepted and telling me how to navigate the process.
I was very embarrassed as the other customers had stopped what they were doing to watch the spectacle unfold.
To all those out there who may meet me or someone like me, please give us the benefit of the doubt.
We are not mentally retarded. We can think, reason and feel just like you.
So if you cannot say something normal to us, I’d rather you did not say anything at all – to save us both the embarrassment.
Valerie Golembiewski is a Tucson wife, mother, grandmother and New York transplant. E:mail: email@example.com