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Interview with Filmmaker, Arts Dabbler, and Kidney Disease Advocate on a mission Scott Burton

Jacinta White (JW): Scott, thank you talking with us and letting us tell your story in our Art Speaks Column. When I saw a news coverage of you and your work a few months ago, I knew I wanted to talk to you. I know that you write and paint, and I would like to know more. That’s a large part of what we’re hoping to do with this column…share the lives of “everyday” people making a difference using art for healing.

Scott Burton (SB): Thanks, I actually don’t speak much about my work but I’m thankful to talk with you about what I’m inspired to do. And, I can honestly say I wouldn’t be here if it wasn’t for my writing. Some who read my poetry say they don’t get what I’m saying. Sometimes my writing is dark. But, they aren’t supposed to get it. It’s for me. I guess it’s selfish, but when I write, I write to release. If it touches someone, that’s great, but mostly it’s for me.

JW: Take me back. Tell me your story. How did you get here?

SB: Well, it started 34 years ago. I was born with damaged kidneys. The doctor’s had given me just two days to live, then they did an experimental surgery that worked. I just found out the other day that they told my parents I would be lucky to last another year. Then they gave my original kidney two years before I would have to go on dialysis. My kidneys actually ended up holding out until I was 12. I had to go on dialysis when I was 12, spent four years on dialysis, and then got a kidney transplant in 1999. It wasn’t really a good match and after four years it was rejected. I went back on dialysis in January 2003. So, I’ve been waiting for another kidney for the last 13 years. But, I’m a very hard match so I’ve been juggling dialysis and trying to keep my spirits up.

JW: And how do you keep your spirits up?

SB: Writing is my outlet. I started writing early. It just started coming out, so I focused on writing. Most of what I write isn’t happy but that’s how I get it out. It’s become my therapy. Instead of screaming or getting angry, I sat down and wrote.

JW: When you write, is it poetry or journaling or…?

SB: There’s a fine line. I found that over the past, my writing is a stream of consciousness. I don’t think about it but it comes out poetically, though I don’t consider myself a poet. I don’t consider myself a writer. I just write. I never took a poetry class. I didn’t learn the rules. If you’ve looked at what I’ve written, it is its own form. I just let it come out. I never sit down saying I’m going to write something great. I just sit down and whatever comes out comes out. And, sometimes it’s good and sometimes it’s terrible.

JW: What do you do with the terrible ones?

SB: Oh, I’ve burned so many notebooks. I will fill them then burn to release it. Of course, I look back and I wish I hadn’t.

JW: You mentioned how writing is a release for you, can you speak more about what that process is like and what that feels like?

SB: I think when I sit down to write and when I go back to read it, there is a lot insight because writing the way I write when I don’t think about it, I don’t know what’s coming out. I’ve had people ask me, “How can you not know what you’re writing?” But when I go back, I learn more about myself in something I write than I ever would just sitting and thinking. And the process? Most of my writing now is on my phone in random places. There is no process. I write wherever. Even when I am driving, a line or thought I want to write on will come to me and I try to remember it so I can write it down later.

JW: Tell me about your paintings.

SB: I dabble in painting. I picked up acrylics six or seven years ago. Lately, I’ve been throwing paint at canvas with no real subject and no real ideas. It’s more about the colors. That’s why I don’t call myself a painter, either. I pick the colors and throw it out there and see what happens. And if I look at the canvas and feel like something is missing from one area, I throw another color there. It’s therapeutic. You turn some music on and start painting and it doesn’t matter if it looks good. It doesn’t matter what comes out. For me, it’s more about the emotion and what you’re releasing than it is about the finished piece.

JW: What kind of music do you play [when you are painting]?

SB: It depends on my mood. Usually it’s something fast.

JW: You and I believe there is healing value to artistic expression. Based on your experience, what would you tell a cynic? Artists who say healing isn’t or can’t be associated with art or creativity?

SB: I think they are doing it for the wrong reasons. I think the best art and the best expression doesn’t follow rules, doesn’t stick to any parameters. It’s raw emotion however the artist or person feels like releasing it. I feel we live in a society based off of rules but if we go back far enough, we can see artists didn’t care if their work was liked or not. I think that’s where the rawness comes in.

JW: Do you have artists – be it painters, writers, photographers, and on – who speak to you?

SB: I would say I’m a huge fan of [Charles] Bukowski. He’s real. Everything he wrote was raw. If you look at his personal life he was a mess but some amazing things came out of that. If I can write one thing that has the kind of impact his writing has had on me, on one other person, then I’m happy. His writings are the first place I go when I’m in a bad place mentally. Beat poetry has also influenced me.

JW: I know you have a foundation as well. What was the impetus and what’s the goal?

SB: Yes, I believe The Forever is Tomorrow Foundation, Inc. is my purpose. I questioned my life several time and its direction. I’ve felt stuck in the unknown. Then, I thought, maybe I’ve been living with this [disease] to make a positive impact. That’s when I decided to establish the foundation as a way to use my story as catalyst to bring about positive change and impact. When you’re getting dialysis, you’re sitting in a room with others but you feel alone. I have my writing and art but some don’t. And there’s a huge lack of public awareness about the disease. The general public thinks you can live forever on dialysis but you can’t. I want to use my passion for film, as well, to raise awareness. Best way to reach people now is social media. Why not use it to build awareness? I couldn’t find a job due to my illness so I switched my passion, my focus. The response is huge. I talk to patients all over the US and Canada. Every week something comes about to let me know it’s worth it. I didn’t start the Foundation to make money. I would love to be financially stable but this work is my passion. I’m hoping to find the balance. That’s my end goal. I don’t think patients have the voice they should have. Kidney disease stats are alarming. If we educate before so that people take better care of themselves, multi-tiered level – local, national and global—and be a resource. No one really is highlighting the research.

JW: You mentioned film. What are you doing in that genre?

SB: I started a documentary about my journey. I’m putting that on hold now for financial reasons and to focus first on a web miniseries. We plan to film, produce and post 2-5 minute mini-documentaries telling other patient’s stories. January is our launch date to start monthly broadcasts to highlight patients and put face on the disease -- who they are and how they deal with disease. We’re hoping to grow to two a month. We will start with North Carolina patients, though my desire is to grow to national and global level. We will highlight those living their lives to the fullest, and difficult stories. This disease doesn’t discriminate and it can come out of the blue.

JW: Scott, this has been both enlightening and inspiring. What would you like to share as we close?

SB: What it comes down to, at the end of the day, is this life is more about what you have done and what you leave behind. When I look at myself in the mirror I ask, if I don’t wake up will I be happy with my life. There are people who are healthy and do nothing with their life. They take their health for granted. People don’t realize how good they have it. We live in a culture where we can emphasize life as legacy and helping others. That’s what I want to do.

JW: Thank you.

SB: Thank you.

To contact Scott:

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