A look into chronic illness and the use of pain’s boundaries for transformation in capitalist society
Originally published on March 22, 2020, for print publication in “Issue 4: the Boundary Issue.” Due to the effects of the COVID-19 pandemic and a loss of funds, we paused on print publication and released the full issue in digital format. The full PDF download is available here.
I first met Eve like many other 20-something year old artists and musicians living in Atlanta — working in a restaurant. We’d sneak off to smoke cigarettes, complain about our jobs, and laugh at how we didn’t know anything about the 300+ beer list. We’d talk about heartbreak and our hopes and dreams for the future. Eve was spunky and bright-eyed, but amid getting to know each other there was something below the surface that both of us didn’t know. As many work friendships go, we lost touch after I got fired from a restaurant again. I later heard that Eve had a bike accident where she suffered a concussion. This concussion began to onset symptoms of another nature and sent Eve down a path of physical, mental, and emotional tests, culminating in a maze-like diagnosis of Lyme disease.
Lyme is an infectious bacterial disease that has the ability to cause various co-infections. It’s been referred to as “The Great Imitator,” because its symptoms mimic other diseases. It is spread by ticks and can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart. Lyme is not covered by the majority of insurance companies in the U.S. Eve’s been given support by the Atlanta community via the Giving Kitchen and a GoFundMe. She has also started a chronic illness support group; in hopes of sharing her story, we intend to further the discussion of what Capitalist Society values in regards to one’s “ableness.” Lyme disease has become more talked about with celebrities like Bella Hadid and Justin Bieber being diagnosed — but in the end, who gets to heal?
I sat down with Eve recently to learn more about her condition. As we began the interview, I watched her take a pill.
What did you just take just now?
Burbur-Pinella. It is a Peruvian herb that I take when I start to feel my symptoms flare, and it helps to minimize them.
You had a moment where you realized that your concussion had to be something else. Can you talk about that moment when you were teaching (yoga)?
That feeling had been coming for a long time, but my fatigue had gotten so bad that I was afraid to go to sleep at night. It felt like I was slipping away from reality — the fatigue was so deep. There were so many mysterious symptoms coming up. I realized that there was something really wrong was when I was teaching a yoga class and I physically lost my ability to talk. Not that I couldn’t remember words, but the muscles in my jaw and throat were no longer able to form words and that was really terrifying. I ended up having to end class early obviously, because I couldn’t talk and I just started sobbing to all my students and it was very clear to me that something needed to change or be resolved in some way.
That sounds like a nightmare.
It feels very unreal and helpless because so many doctors don’t have enough adequate knowledge about this and they never admit that they don’t. So a lot of us are spiraling into Lyme disease.
When you got diagnosed you must have felt relieved and finally seen, although it was such a difficult process to get to that point.
It’s also a really hard diagnosis to get because Lyme is such an aggressive and an extremely complex disease to treat, and I was really grateful to have a diagnosis and be like ah-ha! I’m not crazy — I know that there’s something else going on in my body!
Let’s talk about insurance. You were losing your insurance at the same time you were getting diagnosed.
It was a terrible set of experiences to happen together, but it did teach me a lot of how much we can endure and figure out. I lost my insurance three weeks after I was diagnosed and was rushing around trying to get these tests done before I lost my insurance. I needed to get an EKG to make sure that my body could handle treatment. The doctors were like, “Oh we don’t have anything available for the next couple of weeks,” and I was like, “No, I’m going to lose my insurance and I can’t afford to do this otherwise — I need to do this now.”
The doctor that I see doesn’t accept insurance anyway, but medications would have really helped if I had good insurance.
Why doesn’t your doctor accept insurance?
Because the medical community is fucked up. Insurance companies don’t want doctors to recognize that Chronic Lyme is a real thing. Which is crazy to me because there is science that makes it so obvious it would be a real thing. But if they did say it was a real thing, then insurance companies would have to pay for people to be on multiple different kinds of antibiotics and other medications for like a year, two years, three years.
So Lyme-literate doctors are doing a practice that is not accepted by the wider medical field. Right now, I’m on a lot of different things, but two of the antibiotics that I’m taking possibly can have a reaction that messes with your heart rate. We don’t want it to progress to a point where I’m in a wheelchair or where I have permanent heart damage. Which is complicated, ya know — it’s not easy to take medication that might screw up my heart while… trying not to screw up my heart.
Can we talk about the cognitive effects? I feel like if something’s wrong with the body it’s easier to understand and compartmentalize, but once it starts to affect the way you think and the brain that must be very scary to approach.
The cognitive things are really difficult. I have Borrelia — which is Lyme disease and Bartonella and Babesia, which are its co-infections. Fear is a huge symptom caused by Babesia. So for a long time before I was treated I felt this deep pit of fear, and I was like, “Why do I feel so afraid?” At the beginning of treatment I was terrified to take all of my drugs at once because of the way they made me feel.
That’s crazy — that’s like a landmine and a maze all in one.
I’m already anxious about this other disease and I have all this other fear. It was really chaotic but the most difficult cognitive symptoms are depersonalization, dissociation, and memory loss. Lyme disease can cause Alzheimers. My cognitive symptoms have gotten so much better. I used to have to take four pills, and I used to have to count how many pills I had in my hand like 10 times — and I still did not know if I had four pills in my hand.
Let’s go back to the depersonalization and dissociation. Were you warned that this was something that was going to happen?
Not really. I mean, it’s like when you are diagnosed with Lyme and start going into treatment you are reading so many things about what might happen. I didn’t start recognizing that what I was experiencing was depersonalization until halfway through treatment.
It’s like the tide and you just don’t know what’s coming.
How did Lyme affect your practice as an artist and yoga instructor? Did it deepen it?
That is the most profound part of this whole experience.
Depersonalization is not depression and it’s not disassociation. It just feels like you are not connected to yourself and you’re not connected to any other human and you’re just kind of this empty shell of a being. And that made interpersonal relationships really difficult for me.
It’s still part of my experience that I’m navigating. Some days I’ll be with someone that I’ve known for a long time that I know really well, and it just feels like I have no connection to you, I have no connection to myself, I’ve nothing to say, and I feel like I have nothing to contribute because it feels like I don’t care about anything. It’s vastly different from depression, although it sounds similar.
It sounds like feeling hollow.
Hollow is a great word for it. I’m struggling to even sit here with all the pain in my body let alone nothing coming out of me and I don’t care about anything. I don’t have the energy to be 26 years old, and I don’t have anything to add to anything.
That was a really difficult thing to look at and to begin to look at the ways that capitalism has seeped into our interpersonal lives. Feeling like people only wanted to be around me when I was having good days and I could “contribute something” and talk about interesting things, rather than just be together as humans. It really made me start to question the expectations we have for each other and this need for a product to come of two humans being together.
Like satisfaction — getting something.
Yes, even the way ideas have become capital. Like, “Oh, we had a really good conversation.” Or, “It was really fun.” That there always had to be something worthwhile, offered, or to be had. Because when you’re sick, it’s fucking isolating as hell, and then it’s even more isolating when you feel like people could care less about being around you because you’re not able to form sentences.
And so a lot of that was pieces of my own judgment that I had to unbraid. How am I quantifying others to think how they’re quantifying me?
Yes, looking at capitalist society and experience as commodity, and how that can make you feel if you cannot “perform.”
It made me really disillusioned with anything interesting.
Ha! I love that!
I got totally turned off. The veils were revealed to me for what games they really are. There was a time when reading made me nauseous and not able to breathe. I used to have to lay in my bed for days and days and days.
What does it mean to be alive anymore and what is interesting? What is vibrant and what is vivid? It stopped being, “Oh, this really cool art show.” It became more like — my palm is connected to my shoulder. Pouring gasoline into my car was this alive devotional act. I had to let go of the things that I thought were exciting.
Yeah, these peaks, but it’s about everything in-between.
I ceased to be able to have goals. It was like, “Oh I’m going to be better next month and then I’ll do this.” A year and half has gone by, and I’m still not there. I have to release these goals and learn to be here. I just can’t think into the future that much.
There are a lot of days where I have unexpected symptoms that flare up out of nowhere. What is my capacity to accept myself in whatever state I’m in, no matter what?
It’s been a huge process of becoming my biggest and most powerful advocate. And I don’t think that is unique for me. I think everyone who goes through the process of chronic illness has to become their own best advocate, because everyone else has their ideas of what’s going on in you and what you should be doing.
I can’t tell you the amount of people who shame me for choosing the pharmaceutical route. It makes me so angry.
Every time we talk about this there’s always something deeper we touch on. I remember the first time we talked about Lyme we really got into loving the disabled body and what that means, too.
The amount of love and respect that I have for my body [now] compared to before I got sick is a massive shift. I see how hard my body is working every single day to move towards life. It was really frustrating for the six months I was treating Babesia; it felt almost like I had the flu every day, and practicing yoga in that space was not easy.
The boundary that is created by pain and suffering of the disabled body is the most profound boundary to lead me deeper into my experience and deeper into the interconnectivity of this world. It’s as if the pain became an anchor to which I could expand from, whereas before when I was in a healthy body — I didn’t know which direction to go in. But when you have pain, there are boundaries. There’s something to press against and something to expand from.
Earlier you were discussing the idea that the Universe is a loving Universe, and I thought it was interesting you were saying that. There were some really scary times where I was like, “Am I going to die?” And I’d be like, “You’re probably going to have difficulty breathing for a while, and if you have to, you can go to the emergency room.” But there was some core stabilization that started happening that was like, whatever happens, you are this greater energy. You literally are the universe. Everything is the universe and it’s all connected, and that became a place of safety for me.
That’s great. I want to tie this in to other people living with chronic illness. The connotation that because I can’t see your ailment, like a broken leg, you must be fine. Or you’re sitting here talking, what do you mean you can’t be a “functioning” part of society? I had a friend with narcolepsy and her experiences of people not believing her because her body appears fine, I think, is an unfortunate shared experience among people living with chronic illness.
There are people that are like, “You’re sick? You don’t look sick.” I don’t feel like I need everyone to know this, but I’m also willing to put in the work too and talk about my experience. People that I know with chronic illness, especially Lyme disease and mostly female-bodied people, have all gone to multiple doctors and [told] them this is my experience, and [the doctors] say, “No it’s not, because you don’t look like it, you’re this age, etc…” But how are you going to tell me I’m not feeling what I’m feeling?
They’re also just symptoms tho!
That is a massive issue with chronic illness and it’s a massive issue with Lyme disease, because it is really a bizarre thing that has symptoms that come and go — where you look pretty fine for the most part — and it’s a shame to me that people don’t listen more to the patients, because I think that’s more where the issues start.
Let’s talk about the help that you have gotten in Atlanta, the chronic illness support group you’ve started, and any advice you have for others struggling with chronic illness.
A vast amount of joy, gratitude, and love has come out of this. One of the best things that started was the scholarship to go to the Shepherd Center. Anyone who has any brain or spinal cord injuries can apply.
I was freaking out because I had to stop working, and I didn’t know how to pay all my bills for treatment. My friend told me to apply to the Giving Kitchen, because I was in the service industry. They have been paying my rent and utilities for the past six months!
I started a GoFundMe, which a lot of people all over have been contributing to. I don’t know what I would’ve done without that resource. All of the support I have been receiving felt like a huge gift — that I am able to be in treatment and have a diagnosis and pay for treatment.
My friend with Lyme and I decided to start a chronic illness support group together. It started as a resource for us feeling so isolated. It’s really hard to be in your 20s and not go out ever, not have a job, spend day after day inside because you can’t be in the sun. We started the group to grieve together. It’s a really cathartic experience and it also makes it feel okay, nothing is wrong here. My experience is okay because someone else is having this and validating me, and I don’t feel so quite alone in it.
I’ve met people with different chronic illnesses and other people struggling who don’t know what they have. We’ll text each other questions about medication and symptoms. It became a support group for whatever you need, with people who have gone through similar things or are going through similar things. We have a hard time meeting in person because we’re sick, so it’s been more of an online resource or texting resource. That’s just the reality of chronic illness.
For me personally, I’ve seen how corrupt the medical industry profiteers are, and I want to provide as much resources and knowledge for people, because I can and I’ve gained so much. Coming at it from a space of love and devotion for fellow human beings who are suffering deeply is very subversive to the current mode of healing in the medical society.
What I would have loved to have heard at the beginning is that everything will be okay, it will resolve itself, trust that this has come into your life for a reason. Because that gives a sense of purpose to the chaos and suffering of being really sick and confused. When I started to tune in with the fact that this came to me for a reason and I am not a victim, everything changed. And finding autonomy in any way you can is the most important thing you can do, and eventually everything will resolve itself. Regaining your power is the first step — and doing that in any means necessary. There are so many ways to do that. For me that was yoga, art, spirituality, and therapy. Get yourself into therapy!
In a society struggling to acknowledge citizens’ basic rights to physical health, it is not hard to imagine that emotional and mental well-being would be considered minuscule let alone altogether ignored. How can we move away from an industrial model of being only valued as much as we can produce or work? How can we be more conscious of subtly falling into a consumerist mindset in our interpersonal lives? One thing we can do is to keep talking about it in support of one another’s wellbeing, and voting for representatives that align with universal healthcare and access for all.
Eve has started a series of tiny houses where the Lyme bacteria, spirochetes, can live outside of her body. Her ability to use pain and illness not only as inspiration but as the catalyst for deep inner transformation to be ever closer to experience is something we hope will help anyone struggling with physical, emotional, and mental pain. And that our conversation about chronic illness expands out towards fighting for life especially when the going gets tough, and you are not alone.
Please feel free to reach out to Eve with comments or questions at firstname.lastname@example.org or on Instagram at @evejamesonbrown.