“I’m not really well known in everybody’s household, but I got a documentary about me,” Sharon Jones says proudly. The soul-singing firecracker who raises the roof and brings down the house from the stage each night she performs is excited about the documentary about her, Miss Sharon Jones! that makes its New York debut this week. Her excitement is understandable and infectious, because the film, directed by Barbara Koppel, documents the worst year of Jones’s life–those spent battling pancreatic cancer. Jones is still here, though, and she’s back on the stage where she has spent the bulk of her life.
Jones entered chemotherapy for her pancreatic cancer in late 2013, which is more or less where the film begins. Cameras follow her as a hairdresser shaves her head for the first time; when she sits in the chemo lounge; when she watches Ellen on the couch, too tired to move. The cameras also documented as she slowly recovered, starting to walk, fish, and sing in church, and they captured her nerve-wracking return to the stage–one that even included an appearance on the Ellen show.
The cameras were there for everything and Jones found that she didn’t mind them in her face, as they made her feel more connected to her fans, even when she was silently suffering under florescent lights in a beige treatment room in a hospital. “I always felt my fans were part of what we did on the stage,” explained Jones. “I thought, we’ll connect even more if they see what I’m going through. They’re watching me. They’re watching the hair, they’re watching me go through that, and I feel that that made us closer. That they were part of me even in my sickness.”
By the end of the film Jones, a long-time Brooklyn resident, was well on her way to recovery. Soon after filming wrapped, the indefatigable singer was back on the road, crossing the globe with her band in support of a new album on Bushwick’s Daptone Records, a label that Jones considers family and help build from the ground up.
2014 was a banner year for her and the band. The album they released in 2014, Give the People What They Want, was enveloped with critical acclaim and eventually earned the group their first Grammy nomination. To top it all off, the documentary was coming out. When Miss Sharon Jones (exclamation point!) took the stage at the film’s premiere at the Toronto International Film Festival in September 2015, the crowd cheered–until Jones informed them that the cancer was back. Real life (exclamation point!) can be a serious buzzkill.
It was a head-spinning moment for the audience, because the documentary version of Jones was ultimately triumphant in her harrowing battle against cancer. It made a good narrative for the film, but in the real world Jones is still very much battling the disease, scheduling rounds of chemo around her continuous tour dates.
“It should be two weeks on and one week off [the chemo], but the doctors work with me,” said Jones. She doesn’t give them much of a choice, though. The same fiery determination that shows up in Jones’s music, as well as in the documentary, is evident in her medical decisions, too. While the doctors would prefer she took a break from touring, gave her body time to fight and recover in equal measure, Jones is not interested. “This is my life,” she said. “All the doctors can do is watch you do what you want. They monitor you and make sure that everything is okay.”
In the documentary, Jones recuperated from her initial encounter with cancer far from the spotlight, sitting around her friend’s house in upstate New York, drinking kale smoothies, and becoming very well-versed in the daytime TV line up. But it seems that Jones is only willing to let the disease rob her of her normal life once. By the end of the movie, Jones was back on stage, and apparently she isn’t going to leave it again willingly, not even as cancer cells coursed through her body. “I want to perform. I don’t want to stay home. I don’t want to sit around and let medicine riddle my body and keep me so I don’t know what’s going on. No, that’s crazy,” said Jones. “That’s why I keep going.”
While Jones’s emotional resilience and resolve is impressive, she also has a very calculated, practical reason to keep going: Money. It costs a lot to be sick in this country and, while it’s not necessarily intentional, the film serves as an indictment of the U.S. health care system, especially for the poor and artists and anyone who has to buy insurance out of pocket. “It’s just unfair, you know?” said Jones. “I mean how much money do the insurance policies cost? And people have to pay for those and then prescriptions and the pharmaceutical companies are making billions of dollars.”
Battling the system while battling cancer has clearly exhausted Jones on a deep level and she seems to have a lot of justifiable anger about the way that health care works in this country. “It’s like, to me, [insurance companies] want a certain amount of people to die you know? Like, I will let these people die out and only the stronger and the richer will survive, and it’s just not fair. It’s just not fair that you have to get out and work so hard and do so hard,” said Jones.
One of Jones’s doctors was not in her health-insurance network and she faced the untenable decision–faced by thousands of people every day–that if she wanted to survive, she had to figure out a way to pay him, all while being too sick to work. “If we’re not out working how do we pay $10,000 each month? It’s crazy. It’s crazy money,” said Jones, philosophically adding: “It’s ridiculous you know, but hey this is where we’re living at.”
Jones is in a particularly difficult spot, because she is the face and voice of the band. If she’s not performing, she doesn’t get paid–and neither does the band. While Obamacare and health insurance can help defray some of the costs of care, there simply is no safety net. In the film, as Jones is going through chemo the first time, the band gathers in their Bushwick studio to talk about the fact that they are running out of money to the extent that one is being evicted from his home.
Jones didn’t know about this conversation until she watched the movie, and was devastated by it. But Jones is also very pragmatic about her limitations physically, as well as emotionally. While she was upset to know that her illness was causing financial woes for the band who she considers family, she’s also philosophical about it. “I can only do what I can do,” she said, before correcting herself: “We only can do what we do. This is our lifestyle. It’s the one that we chose and you deal with the consequences.”
One thing that the film makes clear is that the band is a family (they even argue like one in the movie) and Jones relies on them as much as they rely on her, especially as she has been trying to balance touring and chemotherapy. When she’s exhausted on stage, the band will carry her through. “They come on about 15 minutes before I come on and get the audience all warmed up,” said Jones. “And they get it, if I have to walk off stage I’ll say, ‘gentlemen do more songs’ and give me that time to do whatever we gotta do. That’s what happens when you have been together 20 years.”
Jones and the Dap Kings just wrapped a tour opening for Hall & Oates and they are due back on the road soon for a string of European tour dates. Jones is worried though, because while adrenaline and the band could get her through the 45 minutes of an opening set, she’s not sure if she can handle the 90 minutes required of a headliner, especially as she has another round of chemo coming up and one of her current medications is causing her a lot of pain and neuropathy.
“I have to be realistic and see what I can do and what I can’t do,” said Jones. While she is incredibly grateful to still be able to get up on stage, sometimes it is difficult. “It is hard. It’s really hard. But you know what? It’s not hard when you put your mind and your heart into it and you’re doing it, you know? As long as you’re not complaining, it’s not hard,” she said.
Somehow between cancer and touring and publicity, Jones managed to make another album, which includes the autobiographical song, “I’m Still Here” which addresses her move to Bed-Stuy in 1960, fight against segregation, and making her way in an industry that challenged her at every turn. It’s clearly been a hard road and Jones has come a long way and knows it. “I’m proud of what I’ve done in all these last years,” she said. “I’m proud that I’m still able to get up and still continue to work, that I’m still able to go on. I’m proud of this movie. I’m proud of how I’ve grown, how I’ve endured and stayed in there and never gave up. I never gave up my dream to be a singer. I’m not going to give it up. My fight is strong and as long as I’ve got fight in me, I’m going to keep on going.”
Miss Sharon Jones! premieres in New York this week.