GARNER, N.C. — Songwriter Jackie Darrell Marion Jr. has overcome challenges to pursue his passion, and this month he released an album.
“He's an adventurous spirit. Always was up to something crazy. You just never knew where he was going next,” Marion's niece Cheyenne Champion said. “And grandma told me that they would play to like, three in the morning in the family room… He's always been a huge influence on me.”
Marion got his first guitar when he was 5 and hasn’t stopped playing since, not even when he was diagnosed with ALS last year.
“Loss of my ability to speak and write left me devastated,” Marion said. “But with the help of this eye gaze machine, it changed everything. It gave me the ability to write and speak and even record my dreams, which has always been a big part of my songwriting. Because of it, I actually was able to adapt.”
It’s become a family band with Marion's brother Matthew and Champion.
“We immediately began playing a ton then,” Champion said. “And we recorded as much as we as we could whenever we found out that he was diagnosed.”
Only a year and a half after his diagnosis, Marion is in a wheelchair and can’t use his voice, but that doesn’t stop him.
“He's been a part of each and every practice that we've had, and he'll stop us in the middle of the song and say, ‘Hey, you guys need to do this differently,’ you know?” Champion said “So even still, yes, he is in charge of his songs, even singing.”
Many people don’t really understand amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, what it is, and the effects it can have on people. It is a degenerative disease that affects the spinal cord and brain.
“This illness does not have a face,” Marion said. “I want people to see what it really is.”
Although Marion is physically limited, his mind is strong, and his creativity is endless.
“So Uncle Jackie has really used his music in this album release as an opportunity to kind of spread more of that awareness and how it affects the people around him and our family and everything,” Champion said. “And also being able to push through it. Despite what's going on with his body, his mind is still fully there, and he's not ever going to stop expressing himself.”
Despite what he’s been through, Marion has never let his diagnosis get in the way of his passion.
“It is important to me to continue my passion because I can,” Marion said. “I have my family all around me as a support group. Because of that, when I have ideas, they help me make it come together in reality. Also, I do want my legacy to live on.”
His biggest message is to never give up on life and never give up on your dreams. Marion’s album, "All My Lifetimes," came out Oct. 15.
