It’s So Nice to See You Out

by Erin Brady Worsham on Wed, 2014-04-30 05:00


In the early days of my ALS, when our son was just a baby-tyke-little boy, we went everywhere. And I mean everywhere! That kid went to puppet shows at the library, children’s shows at the theater, symphony concerts and movies in the park, jazz festivals, art fairs, museum exhibits, cultural festivals, street fairs, the state fair, air shows, and church picnics in and out of town …

You name it, we were there, especially if it was free! So it’s understandable that I might get a little irritable when well-meaning individuals would come up, pat my hand and say, “It’s so nice to see you out!” I would smile tightly and think to myself, “What?! You think my husband keeps me locked in the closet?"

That was then, but little boys grow up. They learn how to drive and they want to hang out with their friends, not Mom and Dad. Accessible vans get older, too, and start to develop problems. My husband and I turned increasingly to our garden for entertainment. Through my husband’s efforts, it’s become a haven of great beauty and peace, beloved of the bees, butterflies and birds. We try to spend time in the yard every day, even when the garden is dormant.  

Perhaps the greatest change has been in me. I no longer feel the need to be always going, in an effort to maintain normalcy. I’m happy to be living at home with my family and sharing many common interests with my husband. The computer keeps me connected to the world, and I am creatively challenged by my art and writing. The contemplative life draws me.

But on those rare occasions now when I find myself out and about and someone comes up and tells me how nice it is to see me out, I can sincerely smile and agree. It is nice to see me out!

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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