Charlie Krouse | Portland, Oregon
This interview was conducted by Aletta Brady on July 28, 2020. Sanjana Bacharya and Talia Fox contributed to the production of this story.
Charlie Krouse is a climate organizer and advocate for reproductive justice and disability rights who lives with Lyme disease from a tick that has expanded its territory due to climate change.
“I'm Charlie Krouse. I'm the Oregon field organizer with Our Climate and I am disabled. I have multiple autoimmune diseases and a benign brain tumor. I was diagnosed with Lyme disease three years ago now but it's believed that I've had it for probably at least 10 years. Because of Lyme disease, I have developed several other autoimmune diseases like PCOS [polycystic ovary syndrome] and Hashimoto's as well.
Key Facts
Lyme disease is the most common vector-borne disease in the United States. Humans can contract Lyme disease through the bite of ticks carrying the bacteria Borrelia burgdorferi. Typical symptoms include fever, headache, fatigue, and skin rash. The infection can be dangerous if untreated, spreading to joints, the heart, and the nervous system (CDC).
Research shows warmer winter temperatures due to climate change is leading to an increase in cases of Lyme disease in the United States (Medical Xpress). Also, with warmer temperatures, the suitable habitat for ticks is expanding, spreading Lyme disease to areas where it did not previously exist (NCBI).
I worked for Planned Parenthood Advocates in Oregon for about five years and began realizing that a lot of the people that were coming in had similar struggles to what I was facing, in terms of reproductive issues. A lot of these problems, I began realizing, stemmed from environmental issues like climate change. My issues stemmed from Lyme disease, which is becoming more prevalent in the United States because we have longer and hotter days, which means ticks live longer. More and more people are going to end up getting Lyme disease in their lifetime. The tick that I was bit by, called the lone star tick, is actually not common to Southern Oregon. It’s common to Texas. And so, I believe that I got Lyme disease because of climate change. Realizing this has put an urgent push on my advocacy work and made me get into climate justice work to pass policies that can help protect people's health here in the United States.
A lot of the struggles that I faced started when I was bit by a tick and contracted Lyme disease. It's honestly still really hard to talk about, but that's why I want to talk about it, because I want to provide a platform for more people to speak about their health issues. I was eighteen years old and was working as an organic farmer in southern Oregon. I had split up with my partner at the time and didn’t have anywhere to live. I had heard about organic farming, how they give you a place to sleep and feed you, and how it was really fun. So, I ended up finding a farm in Ashland and decided, why not just pack everything up and try farming.
It was there that I started developing these very weird symptoms. I remember I started getting really bad headaches. I lost a ton of weight and was really fatigued. Then I started getting really severe bladder problems. I felt like I had a UTI permanently for months on end and I kept going to the hospital but the doctors wouldn't even test my urine to see what the problem was, they would just give me antibiotics and send me on my way. I would feel slightly better for a while and go on with my life, and then I would suddenly have these symptoms, like fatigue, overall aches, UTI pain and would have to go back to see doctors. This happened for about four years. I had moved to Seattle, still facing the same issues. I would feel fine, for about three months, and then the cycle would repeat itself.
Charlie working on the farm.
“I want to provide a platform for more people to speak about their health issues.”
After about three years, I moved to Portland, Oregon. I decided to go vegan and started feeling a lot better and I didn't have that pain for a while. But then, out of nowhere, I was throwing out my back doing nothing. I remember at one point I threw out my back just biking to class. This was a normal bike ride that I had done every single day, but this time, I couldn't stand for an entire month and had to go to a chiropractor like five or six times. He mentioned how there must be an underlying cause to this but I didn't really have the money to pursue what was going on with me. I was working three service industry jobs while going to school full-time while also volunteering at Planned Parenthood and being on their Board of the Leadership and Advocacy Team. So I was working like, hundred hour weeks!
I moved in with my partner after around three years of living in Portland. We were living in a basement and that’s when my symptoms got, like a thousand times worse. It went from having bladder pain, fatigue and aches once a month to not being able to get out of bed. I completely crashed. I couldn't stand up. I swelled twice my size. I was seeing double and having blurred vision. I was vomiting. I ended up losing my job as a barista because I kept having to go to the ER, and the person who owned the coffee shop that I was working at had absolutely zero empathy for what I was going though. I ended up being in the ER about five times in one week and I was like, I need to figure this out. This isn't okay. I'm in way too much pain.
Key Facts
Hashimoto’s disease is an autoimmune disorder that can cause hypothyroidism, or an underactive thyroid. The immune system attacks the thyroid, causing damage and preventing the thyroid from making enough thyroid hormones (NIDDK).
Polycystic ovary syndrome (PCOS) is a common health condition that affects 1 in 10 women of childbearing age, caused by an imbalance of reproductive hormones. The hormonal imbalance can create problems in the ovaries, affecting the menstrual cycle and potentially leading to infertility or development of cysts in the ovaries (US Office on Women’s Health).
So I started seeing doctors. The first doctor I saw called a psychiatrist who came in trying to explain to me how we sometimes just make things up in our head, and that we're actually not in that level of pain. I stormed out of the office and ended up finding a naturopathic doctor who was a two hour drive away from me. She made me get a bunch of tests, and was the one who found my brain tumor. She also found out I had Hashimoto's and said she was deeply concerned that I had Lyme disease, but that the test to detect Lyme disease was quite expensive and often came back negative, even if one had the disease. So she decided to start preemptively treating me for it. And for the last three years, we've been in the process of treating me for this disease. I have made huge strides and started feeling better, although, out of nowhere, now and then, I will crash and get sicker.
Lyme disease is a disease that stems from a tick bite that could cause multiple issues. Basically it is a bacteria that a particular tick leaves in your body that attacks your nervous system. The most common symptoms of Lyme disease include extreme fatigue and overall body aches, but it can lead to more extreme symptoms. Left untreated, it can lead to neurological problems. Hashimoto's is a disease where your immune system attacks your thyroid, which controls your hormones. It can cause things like hot flashes, extreme mood swings, and steep weight gain or loss. It also causes swelling and affects your stomach, making it hard to digest certain foods.
Over the years, I had been laid off from several jobs for being just too sick to stand up, too sick to focus on things. Most of them were service industry jobs, but I just finally landed the job that I have now, which has been a dream job of mine since I can remember. I’m working in climate policy and actively education youth leaders who are in the positions I have been in before, working for advocacy while also going to school and figuring out their lives. Through this role I’ve finally been able to start taking care of my health for the first time in my life. I'm on a new round of medication that seems to be helping. And now that we know that I'm allergic to meat due to a specific gene that Lyme disease can produce when a tick bites you, it's a little bit easier to like actually function in society again. But this is the first time in about three years that I'm able to like leave my house confidently on my own.
Charlie enjoying the mountains.
I lost a lot of friends and family members when I got sick. I wish more people understood about these diseases because I'd been struggling really hard with my illness. But you don't have to understand it in order to be there for someone. Sometimes, the easiest thing you can do is ask someone how they're feeling or if they need anything. Also, I think it’s important to understand that if someone is feeling irritable or emotional it's because they are experiencing a level of pain that normal human bodies cannot handle. It's a level of pain that you eventually get used to, but I remember very viscerally when I first got sick, I felt like I was not going to survive this pain and wondered how I was going to do this for the rest of my life. But I've started building up a tolerance to it now. Like, pain that used to be a 10 for me is now a 5. Just because you see disabled people existing in society, it doesn't mean they're not constantly in pain. They still need to know that there are people in their life who want to be there for them.
‘Climate justice is disability justice’ means to me that climate change is going to affect disabled people more than it affects able-bodied people. Just on a basic level, let's think about hurricanes. Who's going to be able to flee their house quicker, who's going to be able to have access to the things they need to survive? Just thinking about the things that able-bodied people need to survive versus the things that disabled people need to survive—these are very different. You can't drag a respirator when fleeing away from a hurricane.
Key Facts
Vulnerable communities like people living in low-income countries, people of color, and low-income households experience disproportionately high rates of disability and chronic illnesses (Journal of Environmental Health).
Also, when we zoom out, we realize that people who are disproportionately affected by chronic illnesses in the United States are people of color. Because of racist structures put in place in this country, people of color are forced to live near highly polluted areas and thus are more likely to suffer from chronic illnesses. And so, when we think of climate justice and disability justice, they are very much intersectional with the Black Lives Matter movement.
“I’m working to deconstruct the ableist narrative in my head that I have to be a non-sick person again and actually acknowledge just how hardcore I am now, dealing with this condition that has forced me to learn a lot about myself.”
Key Facts
Mortality rates during disaster events are between two and four times higher among disabled people, compared with the general population (UN).
Structural barriers including lack of accessible infrastructure, transport, and communication resources affect disabled people on a daily basis, and can become life-threatening to persons with disabilities during extreme weather events (Truthout)
I wish that more able-bodied people in the climate justice movement acknowledged that disabled lives matter. When I first started to work in climate justice, I was horrified. I would show up at events and rallies and there wasn't even a deaf interpreter. I'm really hard of hearing and I rely on interpreters most of the time, so I was appalled. When I was going to rallies every day in Oregon for a climate justice bill, there wasn't even wheelchair access to them. There weren't multilingual flyers about these rallies. They weren't inclusive in any way, shape, or form. I'm hoping that this changes and organizations work towards being more inclusive, from having deaf interpreters, wheelchair access to events, and multilingual informational pamphlets, to amplifying disabled voices and talking about how this crisis disproportionately impacts disabled people.
I feel like the disability movement has a lot of wisdom that the climate movement can learn from. One of the most powerful things that I've done for myself is just working on rewriting my narrative in my head. I’ve spent a lot of time in the last three years sitting and grieving over the person I used to be, and there's always been this slight hope that I'll get back to being like that someday. That's something I aspired to without ever taking the moment to acknowledge just how much I go through every single day. I'm working to deconstruct the ableist narrative in my head that I have to be a non-sick person again and actually acknowledge just how hardcore I am now, dealing with this condition that has forced me to learn a lot about myself. I think that as an activist and ally, a lot of our work, whether we're disabled or not, focuses on an overarching goal or some kind of utopia that we can help create or foster, but we don't ever take a second to pause and realize how hard we fight every single day just to exist and bring awareness to these issues.
“One thing I’ve learned since I’ve been struggling with my autoimmune diseases is that this is a marathon, not a race. And I think that is so relevant in the context of the climate justice movement.”
One thing I’ve learned since I've been struggling with my autoimmune diseases is that this is a marathon, not a race. And I think that is so relevant in the context of the climate justice movement. Of course, we feel that immediate need to just get up and fight every single day, but what I see so often, especially among youth leaders, is extreme burn out. We're not going to fix this overnight and we're not going to be able to fix it if everybody's too burnt out to do anything. It’s important to relax. It's like how I treat my body. I'm not going to get better if I don't at least spend one day a week in bed. I'm gonna get sicker. It's going to get worse. And so I have to force myself to just take some time out and reflect and think about what I'm doing with my body. I'm going to take care of her, and I think the same thing needs to go with the movement. It’s important to slow down. We need to be able to take care of ourselves and make the space for that.
I think the essential thing for climate justice and disability justice is just being able to provide everyone with their basic needs, right? So, if people no longer have to just be in survival mode all the time and are able to function without those worries, I think that's the first step.
Key Facts
Americans with Disabilities Act (ADA) was initially published by the Department of Justice in 1991 and revised in September 2010 (ADA.gov). Among other things, ADA specifies certain design requirements for the construction and alteration of buildings to ensure access to these spaces for people with disabilities (U.S. Access Board).
Utopia would be a world where everyone got a basic income, healthcare was free, every single building was ADA accessible, disabled people would be able to access their needs for free, we wouldn’t have these harsh polluters, fossil fuel industries wouldn’t even exist.
But, the very basic thing is to deconstruct this capitalistic structure we live in right now and just ensure people’s basic needs are met. I think, hopefully, with what's currently happening in our political climate, it pushes the needle towards that course.