By H. Drew Blackburn
The doctor prescribed that Charlsie Grace come back for a diagnosis when she's in her 30's; it's not common for a 27 year old to have this illness. The physical symptoms -- a loss of coordination, feeling as though your neck is a straw and your head a bowling ball -- were there. Eventually, a stew of intuition, curiosity and medical precociousness got the best of her and Grace sought another opinion. In January she got tested and by February she knew.
The good news: Grace is no hypochondriac. The bad news: She has Huntington's disease.
Grace, a booking agent, will do what's apropos and hold two benefit concerts to help lessen the financial blow of being diagnosed with Huntington's disease. The first of those takes place tomorrow night, Thursday, May 29 (her 28th birthday) at Club Dada with Diamond Age, Eyes Wings and Many Other Things and Inter Magnetic playing sets. She also has this CrowdRise donation page.
Cameron MacPhie said his band At Night couldn't make the show together, but he relished the opportunity to play the benefit and instead signed on under his solo moniker, Inter Magnetic.
"I adore Charlsie, I think she's a great person. I will do anything to support her and any event that's she's a part of," MacPhie said. "She's got her shit together. Let's put it that way."
As the woman behind the booking agency, The Artist Collective, Grace has had her hands all over Dallas' music scene for the past decade. Last year she booked over 100 shows at The Crown & Harp, this year she's been curating bills at Club Dada and City Tavern, and in April of 2015, she's planning on bringing a music, arts and culture festival to Deep Ellum. Well, a new one.
"In general I think [the Deep Ellum Arts Festival] doesn't live up to Deep Ellum's standards -- which is kind of harsh I think," Grace says. "I feel like Deep Ellum can do so much better because it has so much history."
Grace's love affair with Dallas and music began when she was a teenager in a grain-of-rice-sized Oklahoma town outside of Durant called Calera. When she was just 15, Grace founded a record label called NextStep Records. "I really had no idea what I was doing. It was kind of an insane thing to do because I was from a town of 1,200 people and no one in that town was like me."
She wasn't shy about seeking guidance. Grace recalls sending e-mails out to more established record labels asking basic questions like "what's A&R?" Subsequently, she began booking shows for local bands, the three on her label and others, at a honky-tonk community building in Durant.
Like pretty much every teenager on the planet, Grace found solace at 16 by virtue of a driver's license. Her newfound freedom triggered frequent visits down south to Dallas for the sole purpose of finding music that she found compelling.
"It's just intrinsically in me to look for something different," Grace said. "All of my friends were listening to country music or just whatever was on the radio."
Shortly after graduating high school, Grace made Dallas her home and started working for Life in Deep Ellum, booking bands to play Live@Mokah.
Booking and attending shows has been a part of nearly half of Grace's life and complications with her health will cause her to scale back.
"I'm just trying to figure out how to keep doing what I love to do and also take care of all this other stuff at the same time," Grace said.
The first trace of medical worries came five years ago with postural orthostatic tachycardia syndrome. This condition makes it difficult for Grace to stand for prolonged amounts of time, makes her feel exhausted,and sometimes she passes out.
Three years ago she learned she had the connective tissue disorder, Ehlers-Danlos syndrome. "It basically means that my joints are falling apart," Grace says. "Just doing really nothing causes my joints to sublux. Basically they just fall apart."
Last year Grace found out her father who passed away at 40 had Huntington's disease. There's a 50/50 chance a person gets Huntington's if a parent has it.
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Huntington's is a neurodegenerative disease that causes brain cells to deteriorate. It's highly fatal and can only be treated, not cured. On average, diagnosees are expected to live 17 years after its onset.
Charlsie's husband, Cody, said that her diagnosis of Huntington's was horrific and terrifying. However, they're taking the news more positively than most would.
"It's probably gonna be really awful to get a death sentence at such a young age," he said. "But she's as ambitious as ever."
CHARLSIE GRACE's Benefit Show with Diamond Age, Eyes Wings and Many Other Things, and Inter Magnetic takes place Thursday, May 29 at 8 p.m. at Club Dada, 2720 Elm St.