Eve Brown
Atlanta, Georgia
“Throughout the course of my illness, I’ve had a lot of members of the community offer to get me groceries, offer to make me food, just give me money even, when they knew that I didn’t have any. And, I think, too, the emotional support of the community has been really important...the community has been what has supported me way more than up there in the government. It’s also made me feel heard, too. Which is really important in this experience.”
Ryan Roach: What is your name and how do you identify?
Eve Brown: My name is Eve Brown, and I use the pronouns she/hers. Yeah, so I am an artist and a yoga instructor. [Sighs]. I don’t know; I’m having a hard time answering that question. I think that is a question that has generally become difficult in illness because all the ways that we identify ourselves are not as accessible to me anymore.
RR: What has your experience been like during this pandemic?
EB: At the beginning it was terrifying. My doctor didn’t even know how it would affect her patients. She works with people with Lyme disease11. I kinda just had to leave Atlanta. I moved into my parents’ house in the mountains because we just didn’t know how it would affect me. I was just kind of spiraling into fear and had lots of fear of dying for the first three weeks. It was pretty tense and full of anxiety for like the first month and a half of it. It was also really hard ‘cause I have a partner who is not chronically ill and wasn’t quite able to understand the fear that I was going through. [Sighs]. I mean, I guess we were all afraid, but I definitely don’t know if – the way that my body is compromised – if it is going to be able to handle this virus.
One of the hardest things was that I have been on hydroxychloroquine for the past year for Lyme, and when Trump announced that it was like “the miracle drug,” suddenly I couldn’t get it anymore. And it was a pretty heavy part of my treatment. So that was really stressful ‘cause I would call all of these pharmacies and no one had it, and then some people had it but they wouldn’t give it to me. Which is just like the run-around that you get all the time anyway. It’s kinda been a rollercoaster. I was just coming out of the more intensive part of Lyme disease treatment when COVID started, so I was finally getting enough energy to maybe work once a week. I’d been out of work for a year and then COVID happened. I’m still jobless. I don’t know it’s just been crazy and stressful, and like trying to make ends meet so I can keep my healthcare cause I have to make a certain amount of money every month. Also paying for treatment- and I don’t know, I feel like I’m talking in circles now but [laughs] that’s kinda what it’s felt like! I’ve had a lot of moments of feeling so out here alone, again. Like – you feel so alone when you’re in treatment, and then I felt that even more when COVID hit. I had all of these things – impossible things – to figure out, like, “How am I gonna make money when I’m living in the mountains with my parents?” So it’s been really hard. And also just the continuation of isolation. I spent the last year pretty much alone, and then when COVID started, it was like, “Okay, I have to go back into isolation again.” And that was pretty difficult emotionally.
RR: What has the experience been like searching for a job during this time period, and what does that look like?
EB: Well, it has been the most stressful. Part of the reason why it’s stressful is that I am less able, so when I tell people about my history and coming out of Lyme treatment, I can see them become less interested in hiring me. And I have not gotten a lot of jobs because of that, which feels really shitty. But also a part of me understands it. I’m also trapped in this continuum of, like, I have to be fully able-bodied in order to receive financial stability – and it’s just kinda been a nightmare. A lot of the jobs that I’ve applied for I have not gotten.
RR: Why do you think the media and politicians keep talking about “vulnerable” populations yet it is very rare that they invite anybody from these communities to represent themselves?
EB: ‘Cause it’s like, “If I don’t have to humanize this person, then it’s really easy to dehumanize them. If I don’t have to know what this person is actually going through, and God forbid anybody else knows what this person is going through, then let’s just keep dehumanizing them like they don’t matter. The economy matters.” I feel it’s this continuation of suppressing our voice and suppressing our experience. Because ultimately, if I were out there, like if it were a part of everyone’s lives to understand what it’s like to be less able, it’s like, how can capitalism function in that. When people are really trying to support different experiences, and different levels of ability that is not feeding the pockets of the people who want capitalism to keep going.
RR: As a society there tends to be pushback against individuals with chronic illnesses or so called invisible disabilities, how has the government provided you support during this time period as someone with a chronic illness?
EB: They don’t support me at all. [Laughs]. They haven’t done anything. I mean, I have tried many times. It’s hard too with Lyme disease because they don’t even recognize that as a thing. I couldn’t get disability or medicaid and I’m still trying but it’s really shitty to have such an intense disease that people are like, “That’s not real. And that’s not real, so like we don’t have to help you.” So yeah, they haven’t done anything. They’ve not done anything at all, ever. [Shakes head].
RR: And not only is our government dismissive of people with chronic illnesses and invisible disabilities, but at least in my experience, society can be in general. How has your community and society been reacting to your chronic illness and your specific needs?
EB: Well, I think when we bring it down to the community level, it really differs. There’s definitely some members of the community who really want to understand what it’s like to be less able and find it incredibly important, especially in conjunction with understanding how capitalism has seeped into our bones. And we don’t even know how much ableism affects us. Throughout the course of my illness, I’ve had a lot of members of the community offer to get me groceries, offer to make me food, just give me money even, when they knew that I didn’t have any. And, I think, too, the emotional support of the community has been really important. You know, like feeling some people aren’t able to sit with the intensity of illness, which, to me, is not an issue of that person, but is an issue of society. We don’t know how to have difficult conversations; we don’t know how to be with lives that look different. In the way that’s not just like, “Oh, you’re an artist,” or, “You’re a lawyer,” but is like, “Oh, you have to sleep most of your week, and the way that you can relate to people is totally different.” So, there’s obviously different parts of people in the community. But the community has been what has supported me way more than up there in the government. It’s also made me feel heard, too. Which is really important in this experience.