Threads: Butterfly Girl

Written and Produced by: Monica Solis

Abbie,

I first met you on the big screen. You’re from Austin, close to where I live. You have a musician dad, and you would go with him on tours as the “merch girl.”

But you were so much more than that. This one girl – Cary Bell – she noticed that you were so much more. She recognized you and your special story, and she decided to share you with the world. She decided to share the story of you, Abigail Evans, through a documentary called “Butterfly Girl,” and you, you are “butterfly girl.”

I saw this documentary about you at this year’s SXSW film festival, in your own hometown of Austin. That’s how I met you –- on a screen. I think, unfortunately, that is the only way I’ll ever know you.

You had a rare skin disease – epidermolysis bullosa (EB)– which you battled all your life. In December, you left this earth in your sleep at the vibrant, young age of 20. But Butterfly Girl the film, isn’t just about your rare skin disease, Abbie, and I want you to know that. The documentary ends up being  about the rarity of your soul, your spirit. In your own struggles in life you always saw beauty and sought the hope of adventure. You were a wise soul with a fighting heart. That is a rare thing Abbie, for people both younger, and believe me, older, than you.

I got the chance to meet the director of Butterfly Girl, Cary Bell, and the producer, Jessica Miller. In the months they filmed you, they told me that you became family, that they really got to know you. I’m glad they did, because it’s through them that I got to know your story.Your story needs to be shared Abbie, in every way possible. So, with the help of Bell and Miller, I’m here to share your story to just a few more people. Today on THREADS – the one they call “butterfly girl.” This one’s for you Abbie.

 

Bell and Miller started a Kickstarter campaign in order to fund the making of your film, Abbie. They even raised more than what they asked for. It has a lot to do, I’m told, with your strong spirit and positive attitude, despite your lifelong battles with a rare and severe skin disease. EB’s a genetic tissue disorder. It caused you to often have painful blisters all over your body, to have consistent infections and to have multiple surgeries. One surgery that stood out to me is the one you insisted on at the age of 18 –- to make a hand out of one your arms, because EB basically prevented any fingers from forming properly.

 

“I think the message to people that battle with their body is that if you battle with your body, you don’t need to battle with your mind. And that’s what Abigail was so good at,” Bell says. “She knew that my body – every day it’s a battle, it’s a struggle – why would I let my mind slip into a place that I have to fight with? So I’m going to keep my mind in that positive space so that I can focus all my energy on keeping my body as healthy as I can.”

I did some research and found there’s no cure for EB, only ways to treat the pain and the symptoms. You could only put bandages on your wounds, Abbie, not erase their entire presence. The only thing to help the physical pain of EB is care.

You got that care from your parents, Staci Bolyard and John Evans. Though divorced, both parents sought to help you in any way they could. Your mom stayed home with you as an alert caregiver, while you hit the roads with your dad as his band’s “merch girl,” sometimes, just to feel a little bit of freedom.

 

 

 

 

This is your dad playing one of his popular songs as part of the John Evans Band.

Bell says you were his biggest fan.

Abbie, the first year that Bell and Miller submitted Butterfly Girl to SXSW Film it was gently turned away because of it’s importance. Janet Pierson, head of SXSW Film, emailed Bell and Miller, saying, “you have something really special here, you need to keep working on it.” So, they kept working on it. The second time they submitted your story it was approved. Butterfly Girl made its world premiere at this year’s SXSW.

But you never found out about the great news.You passed away on December 23 last year, two weeks before Bell and Miller would get the news about the movie’s SXSW admittance.

I think up until maybe yesterday, I really didn’t want to be here, at the festival, personally, just as a person. You know, not as a filmmaker, of course it’s a great honor; but as a person, I miss her so much. I miss her so much.
– Cary Bell

It’s no secret that EB is a life threatening skin disease. But, Bell tells me, your death was something she never expected –- something that put her and Miller in total disbelief.

They tell me how can you be gone, when you were so alive, so vibrant?

They felt so close to you, Abbie, and so responsible, that they used the network they had created through the Kickstarter campaign for your movie to raise enough money for your memorial service.

“How do you work through grief? I kept saying to Cary, ‘we are able to share her story, share her legacy with the world,’”
– Jessica Miller

You must know this, Abbie: Bell and Miller were not only honored to share your story but inspired by the story they were sharing.

They tell me that at your memorial there were hundreds of people because of your strong personality.

 

 

“She had this energy. She would draw people to her. And when you talked to her, you felt like she was your best friend.”
– Jessica Miller

 

That personality is something that shines so radiantly in the movie. It’s something I connected with, and I’m not alone.

People come up to us, people write us – even people who have just seen the trailer- and say things like ‘It was so great to watch this and to see that there’s hope for me,’ and I think that’s another element to it as well,  that ‘Oh I can be happier, I can be cool.’  Abbie was cool man. Anywhere she went, everyone wanted to be her, everyone wanted to be around her…I think that’s what it is – keep your mind strong.
– Cary Bell

You were strong and you never backed down. You are a “butterfly girl,” not just because EB is often referred to as “the butterfly disease,” because of the way it makes your skin so very fragile. It’s also not just the fact that your dad wrote a sweet song for you by that very name. You are a “butterfly girl,” Abbie, because you were never afraid to break free, to venture into the unknown, to grow and to know the sunlight.

At the beginning of the film, she says, ‘This is what I want. I want to travel,’ and then that girl figured out how to do it and did it. She did it on her own. For her, going to California was the dream. If that girl could find such amazing pleasure and such beauty in something as simple as getting on a plane and traveling to a state that’s only a three hour flight away…Everyone that watches this film should be able to find the beauty or find the amazement in something as small as whatever you’re up against in your life.
– Cary Bell

You got a warm reception at SXSW, Abbie. But it does not stop there. Butterfly Girl is set to screen at other festivals, like the Full Frame Documentary Film Festival in North Carolina and the Nashville Film Festival in Tennessee, both taking place next month. Then your story will be shared at the Chicago International Music and Movies Festival in May.

So spread your wings, Abbie, you’ll be traveling again soon.

– Monica Solis, KTSW FM 89.9

Film stills provided by: Butterfly Girl film