In a home always centered around music, a record player sings in the background – a reminder that, as much as we would like to choose the soundtrack of our lives, much of what plays out is beyond our control.
For Jennifer and Brian Parker, the question has become: How do we respond to the dance set before us?
Their home, outside of Atlanta, is lined with album covers well-loved over time. Those albums document their lives just as much as the family scrapbooks that share the shelf – filled with pictures of Brian on his motorcycle and memories of road trips and adventures across the county.
“We’ll put on records all day long, we always have,” Jennifer said while tapping her foot to the beat.
After the Parkers married 22 years ago, they lived a lot of the lyrics they loved. When Brian turned 41, the melody changed dramatically. He was diagnosed with ALS, a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal chord.
“Honestly, a lot of my life is defined as before and after ALS,” Jennifer said.
Brian is now confined to a wheelchair. A trach and machine breaths for him. He misses working as an audio engineer and playing his guitar.
But, ALS has not taken his love of art -- or his ability to create it.
Brian uses the one part of his body he can still move -- his eyes -- to meticulously guide a virtual paintbrush. It is part of a computer program that allows him to create shape and use color.
“It is very tedious,” Jennifer explained. “What would take us an hour would take him a week.”
Brian uses several shapes to make one large image. Right now, he is creating a guitar that has remarkable detail.
Before he got sick, Brian said he never considered himself an artist, outside of music. This new outlet has provided him a place to express himself.
He types a message using a computer program where his eyes guide a cursor over a keyboard.
“Painting gives me a purpose for each day,” Brian typed. “I hope it can inspire other people to look for ways to keep expressing themselves.”
He added, “I can’t imagine what it would have been like to have ALS 15 years ago without the current technology.”
Brian’s artwork hangs proudly in the Parker home. Jennifer said she loves to look at it every day.
“I see color and life and vibrancy coming from someone who could be in such a dark place,” Jennifer said.
The shelves above the couple’s record collections are filled with medical supplies. Jennifer is now Brian’s full-time caregiver and said her husband reminds her that every day is a chance to make something beautiful, even when it doesn’t feel that way.
“It is really important to stay positive and take one day at a time, and take one hour at a time,” Jennifer said. “If that is what it takes, just tell yourself to keep going and that you can find joy in every day, no matter what situation you are dealing with.”
In a life that has changed drastically, the couple has maintained their constants -- music, art and each other.
“He inspires me, he gets up every day and smiles and has a good attitude and he tells me to buck up and keep going.” Jennifer said. “How lucky am that he lives with something so devastating but finds color and beauty in it.”
Brian typed, “I just choose not to let ALS defeat me. It is just easier for both of us to stay positive.”
If you would like to support them in their journey, visit their GoFundMe page.