The stillness of ALS sometimes brings out the
rude and crude in strangers
by Erin Brady Worsham
My family has been vacationing on Walloon Lake in Michigan since I
was a little girl. I saw no reason to change the tradition when I learned
I had ALS (amyotrophic lateral sclerosis) in 1994. I wanted our son,
Daniel, to grow up with the same sense of excited anticipation my siblings
and I had felt as vacation drew near.
North Arm Resort, where I spent so many summers with my family in Cabin
5, had been closed and leveled, but we lucked into a cozy cottage on
the lake not 500 feet from where our old cabin had once stood.
This year there wasnt an inch to spare in our minivan. My sitter brought
along her lap dog. We brought Buddy, our water-loving golden retriever,
and our new kitten, who was too little to stay home alone. Then there
was the normal luggage, my equipment and supplies, and our 7-year-old
sons toys. It was a zoo!
In spite of the high-tech gear I tool about with (power wheelchair,
ventilator and tracheostomy tube, augmentative communication device,
etc.), Ive never felt particularly different from the other vacationers
(known as Fudgies) wandering about the nearby towns of Petoskey, Charlevoix
and Harbor Springs.
But a series of incidents during our stay this summer opened my eyes
to how others might see me.
Stares and Glares
One evening after dining at the historic Terrace Inn in Bayview, we
took Daniel to Murdicks Famous Fudge in Petoskey for ice cream. Hed
been looking forward to getting Superman ice cream all day.
It was almost closing time, so I stayed in the van. A woman walking
by caught sight of me and halted in her tracks. She leaned closer and
peered into my window.
I was surprised at her audacity. My surprise turned to shock when she
spoke to a friend sitting on a nearby bench. The friend approached and
gave me the same once-over! I would have given a lot of Superman ice
cream to have been able to stick my tongue out just once at these rude
women.
En route to the cottage, my husband, Curry, made a last-minute dash
into Walgreens with Daniel. Another man with the same idea left the
store with his purchase and crossed in front of our van. He glanced
at me and I smiled. He stopped in amazement, then continued on to his
car, all the while looking back over his shoulder at me. In the car,
he said something to his wife and they both gawked. The whole thing
was so comical I began to laugh!
Foot-in-Mouth Attack
I might have been able to put these strange incidents behind me, had
it not been for the clincher the next day. Our neighbors two doors down
invited us to their bonfire. Bonfires under the stars are a magical
part of summer in Northern Michigan.
Curry navigated my wheelchair through the dark to the crackling fire
and made the introductions. As is usually the case when Im out socially
with Curry, I didnt have my communication device. He left me for a
few minutes to grab Daniel for smores. In that brief window of time,
the unthinkable happened.
A man who had missed the introductions joined us. The lazy conversation
petered out as peoples thoughts lost themselves in the dancing flames.
In the silence the newcomer asked, "So, whos the dummy?"
Complete silence followed. No one knew what to say or do to smooth
over this appalling moment. Without Curry, I couldnt speak up for myself.
Even as I dissolved into tears, I couldnt help feeling a pang of sympathy
for the man as he realized his mistake. He pulled his cap down over
his face, dropped his head in his hands and melted back into his chair.
Whos Who?
I knew he would live with those words for a long time to come. Curry
helped me to understand that all three instances had involved darkness,
which made it easy to mistake the stillness caused by ALS for the inertia
of a mannequin. These encounters taught me that it doesnt matter what
the world sees, as long as I know who I am on the inside.
Some days, as I work at my computer finishing up a painting or writing
a story, I can still hear those words. But now I smile.
Whos the dummy?
I got news for you, pal, it aint me!
Erin Brady Worsham is a writer and computer artist who lives in
Nashville, Tenn. |
