Who's the Dummy?

by Erin Brady Worsham on Wed, 2014-07-30 12:07

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 was diagnosed with ALS 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 closed and been leveled, but we lucked into a cozy cottage on the lake not 500 feet from where it had once stood. 

This year there wasn’t 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 son’s toys. It was a zoo!

In spite of the high-tech gear I tool about with, I have 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. 

One evening after dining at the historic Terrace Inn in Bayview, we took Daniel to Murdick’s Famous Fudge in Petoskey for ice cream. He had 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 walked over to her friend sitting on a nearby bench and spoke to her. 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 the 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!

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 I’m out socially with Curry, I did not have my communication device. He left me for a few minutes to grab Daniel for s’mores. In that brief window of time, the unthinkable happened. 

A man who had missed the introductions joined us. The lazy conversation petered out as people’s thoughts lost themselves in the dancing flames. In the lull the newcomer asked, “So, who’s the dummy?”

Complete silence followed his question. No one knew what to say or do to smooth over this appalling moment. Without Curry, I could not speak up for myself.

Even as I dissolved into tears, I could not 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. 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 doesn’t 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. Who’s the dummy? I got news for you, pal, it ain’t me!

About the Author

Nashville artist and writer Erin Brady Worsham was diagnosed with ALS on Sept. 7, 1994. She began using the ventilator on Thanksgiving day in 1997 and has never looked back. She continues to work and exhibit her art as a professional artist.

Says Worsham, "One of the reasons I believe I have lived so long, other than my great husband and son, is that I don't think about ALS. My blog titled Cosmic Connection is about contemplative observations of the world around me that ALS has allowed me to make through the peaceful stillness it has imposed on my life."

To learn more about Erin Brady Worsham, read the following articles about Erin and her life with ALS:

Creativity Soars Over Barriers

Having Children After an ALS Diagnosis

A Turn of Fate

Secrets of Survival

The Artist Inside

First Person Singular: A Magic Carpet Ride

Staying Alive: Does Personality or Belief Make a Difference

Mind Muscle

Life on the Vent

Connect with Erin on Facebook and check out more of her artwork for sale on Etsy.

Erin's blog Cosmic Connection is exclusive to MDA's ALS blogs.

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