Akenya is a singer, pianist, and composer from Chicago. In honor of the end of Lyme Disease Awareness Month, this past May, Akenya released a single titled “Decay.” Her fans have waited over two years since the release of her last single, “Disappear.” “Decay” intimately describes her experiences with Lyme Disease, an illness spread by ticks that can cause fatigue and pain, among other symptoms; some 30,000 cases are reported to the Centers for Disease Control every year. A percentage of proceeds from the song go to the LymeLight Foundation, which provides grants for Lyme disease treatment. The Weekly sat down with Akenya to talk about her relationship to Lyme disease and her single. This interview has been edited for length and clarity.
Could you talk about the project that you’re working on and what you’re trying to express with it or what you want to accomplish with it?
I was diagnosed with Lyme disease during Lyme Awareness Month, and that was a year ago. So I knew coming upon May that I wanted to embark on something to hallmark a year of dealing with this. I actually reached out to some local press to say I want to do a follow-up segment on what my life is like a year later. And then I thought, I should put something creative behind this too. As much as it’s important to talk about it and just get the information out there, I was like, well, I’m an artist and that’s how I best express myself. I had been working on this song, just writing about how I was feeling anyway, a couple months before. I wasn’t planning for that to come out, but I started to be really just proud of where it was headed, and I was like, I think I could release this song in conjunction with what I’m trying to do for Lyme awareness.
I was blessed enough to receive a medical grant from this foundation called LymeLight. And I thought, what if I can donate some of the proceeds back to them to help other people? And they were super excited about that idea. I’ve just had positive experiences with them, and I also really love that they focus on helping children and young adults because those are the people who are the most vulnerable, who can’t really advocate for themselves.
I was like, okay, I’m gonna have to do a photo shoot for the single, and I was like, I know a girl who has Lyme. And so, Sam Fuehring, I ended up hitting her up. She was super excited because she was saying, “I want to do something for Lyme Awareness month anyway.” And then she recommended me to an engineer [Jayson Rose] who also had struggled with Lyme. So it really became this kind of family affair project.
Do you see yourself teaming up with the same artists or other artists with Lyme in the future?
Absolutely. It’s been so great to be able to connect with people who know what I’m going through and they’re also creative so I can relate to them on several levels. And they’re just mad talented. The photos came out so great, the song is sounding so great. I really feel like the universe has been looking out for me because I’ve been, in regards to my album, just praying for somebody to help me make it, and a lot of the people I had in mind are super busy. And I found this guy [Rose] and he really knows what he’s doing, and I’m like, I’m probably gonna make my album with this guy.
How has Lyme has impacted your creative process?
I think I’m really fortunate that I’ve been able to use my creativity as an outlet. I think honestly having art has helped me heal. I don’t know what I would have done without that outlet. I wouldn’t have written this song, this song I’m really proud of, if I hadn’t had this experience. It just wouldn’t exist. So I’m grateful in that way.
Lyme affects every part of your life. So it kind of affects how I’m able to do anything, whether it’s my art or working or, you know, the past few months I haven’t really been doing anything. I’ve really just been at home focusing on taking the medication I have to take within the day. That was another thing about the photo shoot that I wanted to be reflected.
If you’ve seen any of the photos where I’m surrounded by pills, those are mine. All of those bottles, those aren’t props. I wanted to really showcase what it really is. In terms of the dead flowers hanging around, the song is called “Decay,” and I’m talking about how it sometimes feels like I’m withering away or wilting away. It was really important for the photo shoot to be composed the way it was, because on the surface the photos just look really beautiful, but then you look a little closer and it’s like “Oh there’s pills everywhere, oh, the flowers are dead.” And that’s Lyme. People look at me and they’re like ,“Oh you look great, have you lost weight?” and I’m like, “Uh, I’m dying.” It’s an invisible illness.
A number of prominent artists have been open about their experiences with chronic illness, for example Missy Elliot with Graves’ disease. Is there anyone you were thinking of when you decided to talk about your experiences with Lyme?
Missy has definitely been open about her struggle. Recently I saw that Mariah Carey said that she’s been struggling with bipolar disorder for years and wanted to finally speak out on that. When you have a platform—and my platform isn’t even that big yet—but I think you kind of have a responsibility. You know, I understand wanting to keep your private life private, especially if it’s a painful thing or a traumatic thing, but you can also save lives.
When you were first figuring out the cause of your symptoms, did you feel like you had to do a lot of self-advocacy? What advice would you give to someone who is struggling with doing that work?
I’m the kind of person who is not afraid to research, is not afraid to ask questions, and has kind of an inquisitive inclination about me. I realized I have to help myself, and I have to continue to obviously seek out people who have medical training and who can help me, but I have to be the number one person in my corner. And that’s the advice that I would give to anyone who’s feeling like they’re not being heard or they’re going through something serious. Do not just succumb to your situation, don’t stop demanding answers, don’t stop asking questions, don’t stop doing your own research.
Are there other things we didn’t touch on that you really want to get out about your experiences or about the project?
I just really want the conversation around chronic illness in general to start shifting toward really getting to the bottom of root causes, not just pinpointing and treating symptoms, not dismissing people when they’re saying “No, I know something is wrong.” You know, really believing people.
Akenya will next perform during “Chicago Overground,” a live Lumpen Radio show that’s part of “68+50,” a series of programs from Illinois Humanities and the Public Media Institute commemorating the 50th anniversary of the activism during the summer of 1968 in Chicago. Vocalo’s Ayana Contreras will host and the AACM Great Black Music Ensemble and Sam Trump will also perform, among others. September 16, 2pm-6pm, at the Co-Prosperity Sphere, 3219 S. Morgan St. $10. All ages.
Joshua Falk is a contributor to the Weekly. He’s a graduate student and data scientist living in McKinley Park. This is his first piece for the Weekly.