In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 15th profile in that series.
Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.
“The cardinal rule in golf is, ‘You gotta play it as it lies,’” she said.
She has created four different art pieces with that theme for an ALS golf tournament.
Diagnosed with ALS in 1994 while attending art school, Erin now creates art by lifting her eyebrows to move a sensor that connects to her forehead and communicates with her computer.
“The themes my art takes on are simply a reflection of my life and the opportunities that come my way, but I like to do a different ‘take’ on whatever I do, especially disability,” she said.
In 1995, Erin and her husband, Curry, welcomed their son, Daniel, after trying for six years to start a family.
“From his earliest memories, his mother was in a wheelchair. Disability was just a part of his life,” Erin said.
“He learned early in his life that people do not always respond well to disability,” she added. “We were at a park when Daniel was just a little guy. He started to play with another little boy. At some point, Daniel asked him if he wanted to meet his mother. The boy caught sight of me in my wheelchair attached to the ventilator and took off running. Daniel called after him, ‘She’s a nice girl!’ My heart broke into a million pieces, and I wished so badly in that moment that I could appear normal for Daniel.”
A few years after receiving her diagnosis, Erin took a trip to Ireland with her family.
“I especially wanted to go to the Marian Shrine in Knock, where an apparition of Mother Mary was seen during the Great Famine,” she explained. “Seeing Mary gave the people great hope and I wanted to feel that gift of hope, too.”
While Erin rarely leaves her property these days, she stays connected to the world through the Internet, where she reaches out to members of Congress about important ALS-related policy issues and runs her Walk to Defeat ALS campaign for The ALS Association Tennessee Chapter through Facebook. She relies on two caregivers who work 7.5-hour shifts so Curry, her “primary caregiver and best friend,” can work and sleep.
“Curry and I were both actors when we met at Circa ’21 Dinner Playhouse in Rock Island, Illinois, in 1980,” Erin said. “He’s still acting – for me! He can always make me smile when he suddenly bursts into song or tells me a funny story. He tries to have a positive frame of mind and he always gives people the benefit of the doubt.”
She added, “Don’t get me wrong. [The man] is not a saint.”
We recently conducted an email interview with Erin about a wide range of topics, from her art to the need to support research into ALS treatments and a cure.
Tell us about your art. What themes does it take on? How do you create it?
I have a sensor taped to my forehead through which I operate my communication device and the computer. [After Curry] discovered how to interface my communication device with the computer, I started out very slowly playing around with the Paint program. I use none of the pre-fab shapes or features. I just want to draw.
You can see the development of my technique through the years. I’ve won a few awards over the years, but they weren’t strictly for art. I’m known as [both] an artist and a writer. My work once appeared as part of an international art exhibit in Washington, D.C.
Tell us a bit about your husband and your son.
My husband, Curry, is a very selfless person. He gave up all his dreams, so we could be together as a family. I miraculously became pregnant the day after my diagnosis, and it wasn’t long after Daniel’s birth that I could no longer take care of him.
I have never met anyone like our Daniel. He’s a truly unique person and we love him dearly. He’s his own man. He treats people with disabilities just like anyone else.
There were many [incidents like what happened at the park] over the years, mostly from adults, and I think it hardened Daniel and made him not show his emotions. That has relaxed the older he gets. He has a great sense of humor and a wonderful shout of laughter.
I love watching movies with him. He’s a deep thinker like his father, and we have wonderful conversations when he makes it home. He is currently a senior at the University of Tennessee in Knoxville.
Who are your caregivers?
I went on the ventilator on Thanksgiving in 1997. I stopped breathing and we were advised to apply for TennCare. We were initially denied, but the Tennessee Justice Center fought for us and eventually won.
Curry remains my primary caregiver. When he had a very serious accident on November 3, 2016, breaking a vertebra, nine ribs, and his pelvis, I had to go first to the hospital for six days, and then to a nursing home for 19 more days, before Curry could take care of me again. It was an incredibly difficult time for my family.
What would you say to someone newly diagnosed with ALS?
I would only want to speak to them after the initial shock and horror had faded. Otherwise, they’ll be too numb to take it in.
I would tell them how sorry I was about their diagnosis. That it was rotten, and no one could say it was anything but rotten.
We hope and pray for a breakthrough, but we also have to be realistic. If you can get past the sadness – and it is incredibly sad – you will realize that you’ve been given a gift; the opportunity to put your life in order and get right with your family, your friends and, most importantly, God.
Think of the millions of people who never get that chance. If you are not particularly spiritual, the chances are good that you will become more so. Never doubt that Jesus is at your side. You will never be alone.
What do you want to say to the people reading this article?
None of us knows where our lives will lead. Disability is a part of life, and the chances of being diagnosed with something catastrophic are not insignificant. It behooves all of us to support research efforts.
If you’ve been diagnosed with ALS, you know how devastating that was. I pray there will come a day when no one will ever have to feel that [devastation] again.
In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for Erin and all people living with the disease.
Contact your representatives in Congress. Recruit your friends to like our Facebook page or follow us on Twitter. Promote a fundraiser. Host a fundraiser. Register for a Walk to Defeat ALS or a Team Challenge ALS event.
Raise Your Voice however you can. Together, we will be heard.