Coming of Age

by Erin Brady Worsham on Mon, 2015-10-05 10:15

On September 7, 2015, my ALS diagnosis celebrated its 21st birthday. It was a very paltry affair with no refreshments, presents or guests. Reaching one’s 21st birthday is usually a major milestone and big celebration, but ALS diagnosis isn’t your usual celebrant. I’m sure it was disappointed. I tried to explain to ALS diagnosis …

Look, ALS diagnosis, I really have to wonder at your intelligence. You expected refreshments at your “party” and yet you took away your host’s ability to eat them a long time ago. You’re not thinking this through, man! And, no, you’re not going to get your first taste of beer or wine on your 21st birthday. I used to enjoy a glass of wine with dinner or a cold beer when I was out working in the yard, but I see no point in putting them through my G-tube just so you can have them. At least I have the memory of what they tasted like … You have nothing, ALS diagnosis.

Did you seriously think anyone would give you presents, ALS diagnosis? Your petty demands over all these years, starting innocently enough with an elevated, portable potty chair beside the bed and ending with the lifesaving ventilator and nursing care, have probably cost all the different insurance companies well over $2,000,000. Presents? You’ve had your presents! 

I gotta tell you, ALS diagnosis, you’ve got a real people problem! The mere mention of your name will clear a room. I couldn’t have paid people to come to your party! Until you learn to play nice with the other kids on the playground, no one is going to like you. Based on your treatment of me, you’re hopeless.

ALS diagnosis, do you know why I secretly celebrated your coming of age? I celebrated because it meant that you have failed, jerk! I’M STILL HERE! Oh, sure, I look like I’ve been on the receiving end of some major pummeling, but you are only making me more beautiful in God’s eyes. I know it drives you crazy that you’ve never been able to touch my heart, mind or soul. They have each grown stronger during your tenure … Congratulations on that! Now, get the hell back in your corner! I don’t want to see your face for another year, loser …

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.

MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy