I called writer Amy Irvine in July 2024 with the intention of interviewing her about medical gaslighting. I wanted to talk about how moving through the medical system can be as erosive as any other encounter with bureaucracy. About how, somewhere along the way, many chronically ill patients lose sense of who they are, because they have spent so much time listening to different doctors tell them contradictory stories about who they could or couldn’t be.
But Amy inhabits a different kind of contradiction: Her first serious encounter with prolonged illness was in her capacity as caretaker. By the time she became seriously sick herself, she knew exactly what the task required. Only, no one was there for her, not in the way she really needed, in the way that she had come to understand that she deserved.
Amy’s memoir, Trespass: Living at the Edge of the Promised Land, received the Orion Book Award and the Colorado Book Award. Her first book, Desert Cabal, was listed as one of Orion magazine’s 25 must-read stories of the decade and was included on Stanford's School of Earth, Energy & Environmental Sciences summer reading list in 2019. It was also added to Outside magazine’s Contemporary Adventure Canon and named as one of Backpacker magazine’s New Wilderness Classics.
Amy is also chronically ill. “It feels like I’m dying now,” she wrote in one of the first emails we ever exchanged, “but the doctors tell me maybe I should just adjust my expectations about what it’s like being in your fifties.” She also has a chronically ill kid with nocturnal epilepsy and Grave’s disease: “For the past fifteen years, I’ve spent most nights on the floor of her bedroom in a sleeping bag within arm’s reach of her bed,” Irvine wrote for Orion in 2022.
In our conversation, Amy talked about how disability can reveal the gulfs between what we generally deserve and what we are specifically owed in any relationship; our shared inheritances and our interdependence; and how to find the courage to witness honestly—to understand ourselves and the context around us and then find a way to live within these terms.
Astra: Tell me how you came to understand chronic illness. Was it with your kid?
Amy: My kid’s seizures became visible when puberty hit. The first time I saw Ruby having a grand mal seizure, I called the ER in Telluride in the middle of the night. It’s a little clinic but it’s in a super wealthy town. The doctor said, “I think you’re overreacting. Are you sure? Do you even know what a seizure looks like?” But I was an EMT. I’ve worked in the field. I know how to diagnose and read symptoms. I was using the right language: She was tachycardic, slightly hypoxic, she had been without oxygen, she was in the postictal phase. Finally, the doctor said, “If she’s had a big one, she won’t have another one tonight.” She had twelve more that night.
She was nine when we got her diagnosed. It was unequivocal. The doctor, when I finally got her in, said it was one of the wildest brains she had ever seen. She said it was clear Ruby had been having night-long seizures since birth, and there had been brain damage caused by each one. And I thought, I knew it. It took me that long to be vindicated. But there was so much damage in the meantime.
By then, I’d burned all kinds of bridges and lost all kinds of jobs, lost friends, lost everything, lost my marriage, eventually, as the kid got worse and worse and worse. I was hysterical.
After the diagnosis, there were so many gymnastics I went through to make sure this kid belonged. Ruby went to an outdoor experiential school. They took Ruby on every backcountry trip they did, but it was under extreme circumstances. I would backpack behind her and sneak up at night to deliver her medication. I’d drop my bag behind her tent so the other children didn’t wake up to a seizure and get scared. I could get in there and deal with it before it happened.
The last trip I went on, the class was taking a red eye to Hawaii. Of course, Ruby did not want to miss it. But I was like, if we put you on a red eye, you’ll have seizures and you’ll be in a cascade of them for the whole trip. So I flew Ruby over on a day trip, but still she was having seizures on the plane. If someone has a seizure on a plane, they’ll turn the plane around. So I bribed the guy next to me with cocktails, because he looked like a guy who drank: “I’ll buy your drinks if you don’t tell on my kid. I know it looks scary but she’ll be fine. I got this.” And he was like, “OK lady, but you’re going to have to buy me two drinks because I just saw the first one and it was really scary.” I would cover my kid with a blanket so if a flight attendant walked by, they wouldn’t see it.
But Ruby got to [go on the trip]. She never missed any of this.
Astra: And then, around the time Ruby was getting ready to move out and go to college, you got sick?
Amy: When I didn’t recover from Long Covid, it felt like I was just reliving everything I’d been through with Ruby. The doctor was pulling away from me rather than leaning in. I went through tens of thousands of dollars and many doctors until I found someone who listened. He did a blood test, and it was full of massive amounts of mold. And then he treated me. And then I actually started to get better.
It was like a heavy wet wool shroud got pulled off from my brain—like my brain had been wrapped in layers and layers and layers of it. It was immediate. My brain fog and my memory [issues] and the neuropsychiatric symptoms, the depression and anxiety and paranoia, all the symptoms that made me feel like I had early Alzheimer’s—it vanished in hours.
Astra: With your kid, you were so clearly like, “I owe this person everything,” and then you committed to that. You’re in that interesting position of actually knowing what it is that you’re asking of other people when you ask for care or accommodations or medical interventions because you’ve given it all yourself.
Amy: But when I was in the middle of it, I was pretty narcissistic. I was feral. I was backed into a corner. I would bite the hand that fed me. I would take what I could get. It was all about scrapping for what I needed. I don’t blame people for distancing themselves from me.
Culturally, we don’t understand how sick people come to find themselves isolated—how in moving through our medical system people become narcissistic and self-serving because they’re so desperate to get their needs met. The sick person needs, more than anything, for someone to sit down and look them deep in the eyes and say, I see you. Your suffering is real. We’re going to figure it out. And this is not your fault. I feel like half the healing started with that. It’s because [my doctor] understood that the way I was behaving—like a feral animal in the corner—was because I had no other recourse. I didn’t have people saying, “Gosh, this is just untenable.” No one was there fighting to make it tenable.
Astra: It’s funny to hear you say that, because feral is also a word I very often use to describe myself. In my own sickness, I remember it feeling remarkable, watching myself fall sicker and realizing, “Oh, I’m becoming a worse person. The person that is capable of showing up to this moment is not simultaneously capable of holding a lot of nuance or kindness or generosity.” I was so tunnel-visioned into the present moment experience of agony—and I think I deserved to be like that. I think I deserved to be that version of myself. I mean, I also deserved the care that would have prevented it—but the whole time that you were describing this vicious caretaker that you became, part of me was like, “Yeah, you deserved to be just like that.”
Amy: Women especially deserve to see themselves in that animal place, skirting around the edges of their feralness.
What I’ve learned in my own sickness is the beauty of showing up and not wishing it were different. Plus, being with a person in that feral state—I can do that now. That’s the gift that came out of it. It is the gift. When an animal is acting like that, what do I do? I’m super gentle and I try to feed them and I try to give them care and give them something to hope for. If all they can tolerate is me looking at them or sitting next to them, then I will do that.
I have a rescue dog now. She’s such a project. But I can completely be with her and not lose my cool because I know: this is not your fault, and I can be with you in this place. And I’m learning to do it with myself and with my students and with my kid. With everything with my kid now, I don’t have to make it better. Before it was like I was clearing every Olympic hurdle to make things better for her, and now I can say, “I’m sorry that it really sucks right now. Maybe you just need to sit with that and be with it and not wish so hard that it were different. I can’t make it different for you. I can’t always make it better for you.”
Astra: How would you imagine getting the care you deserve from these other relationships in your life? Knowing how to inhabit the difference between what I deserve generally, and what specific people owe me—it often feels like such a big gulf. How do you interact with that?
Amy: That is the million-dollar question. I’m retroactively learning how to say what I deserve. There were a lot of people who abandoned me in crucial moments. I just went through this profound experience alone, and it was brutal. But I get to choose how much I let somebody in now. I don’t want to share some things now. I understand that you couldn’t be there for whatever reason, but that doesn’t mean I just come back and share myself completely.
In that compassion is this radical new ferocity around a care that now I understand has always been my birthright. We’re conditioned so early on as women to tolerate a certain amount of dispossession from our bodies, a certain amount of discomfort. It’s very hard to assert your needs and have expectations around care for your own body in a culture that doesn’t care about women’s bodies except as objects.
Astra: How has this process of coming into your own awareness of what you deserve changed how you think about what it is that you think we all owe each other?
Amy: What we owe each other has changed radically for me as it becomes clear that America’s sense of rugged individualism has been so detrimental to our planet, to ourselves, and to each other. We’re seeing the extreme results of not having an understanding of what we owe each other.
What we owe each other is compassion. We are connected. We owe each other an acknowledgement of how we are all organisms functioning in an ecosystem. We owe each other our interdependence. The health care system is a limb of this broken ecosystem where the pathogen of individualism has completely taken over. On every level of this society, we are in deep need of remembering our connection. I mean it in a biological sense, but it does also present as a lack of spirituality, even and especially among Christian nationalists and evangelicals. We’re talking about a movement of people that are very isolated. If you’re traumatized and you become isolated, the executive functions in the brain that let us connect with one another become diminished. You become more and more isolated. More and more, it’s about fending for yourself. It reinforces the myth that you’re alone. There’s some expression of that even in our health care providers. When in reality, I think we owe each other everything.
I was teaching in the environmental studies department at University of Montana a few years ago. I handed my students this wonderful essay about fire to read, and they were like, “We can’t read this. We’re over it.” I spent the entire rest of the semester helping them develop compassion. Pity overwhelms us. Fear overwhelms us. If we’re afraid, if we’re thinking “What happened to them is going to happen to me.” That’s draining—that turns us feral. But compassion is energizing! As the Buddhists have always known. If we’re going to save the planet, our kids, ourselves, there has to be this understanding of compassion as a practice. I can’t see any other way through.
Astra: I empathize with your students! Because on one hand, we deserve to not have to keep thinking about these things. But we also owe it to each other that we do—that we find a way through that is survivable. I feel curious about what this decades-long chronicle of illness and uncertainty taught you about what it means to build tolerance for the unknown, and to build a relationship with something that has become unrecognizable.
Amy: It was the day I accepted the Buddhist tenet that all suffering stems from wanting things to be different. That was the game changer for me. And to be able to stay with that clarity that this is a thing happening right now in my body, this is a thing happening around me right now. This is happening. This is reality, and we just need to be in it and figure it out and stop wasting time wishing it were different.
Americans, more than any other culture, wish things were different. Everything. It creates this fantasyland—we have created all these alternate realities so that we don’t have to deal with the reality that we descend from people who built the wealth and resources that we now have off the bodies of enslaved people and the people we massacred.
We’ve created all these sick systems, we’ve harmed and dysregulated our bodies, because we’re not dealing with generational trauma. That this is something we carry epigenetically. It’s something Black and brown people know, but it’s just beginning to seep into White consciousness. We don’t address that as White people, we’re carrying the trauma of being the perpetrator. These dark stories live in you and toggle these switches on your genes. It may explain why Americans have such low distress tolerance. We have all this melodrama that’s just projected trauma.
What if we actually had a care ethic where we acknowledged the ancestors and we had language and ritual that had to do with looking at the whole picture and the harm that was done?
I come from colonizers who married these women they treated like animals. They made them live in mud holes. I know that my family was sent to the Bear River Valley and slipped in after the government slaughtered the Shoshone. The slaughterhouse near my family’s ranch, where we took the cattle to be butchered, is on the grounds where they slaughtered the Shoshone. The story was, “We were great friends with the Indians.” Our land? We literally moved in on top of their bones. Our cows’ blood is mixing with theirs. Does nobody think that this haunts us in some ways? We know that epigenetics is a way for these things to haunt us physically.
I get intense reactions from writers and students who live in or adjacent to privilege. But now I’m developing a whole pedagogy around, how deep can my story go, and what other stories do I touch by reaching further? Those stories connect to mine. And whatever harm was done is harming me. It doesn’t mean that wonderful things didn’t also happen. But the harm is there, we’re still carrying it, and it’s still affecting us. This is a huge part of why America is so mentally and physically sick despite our wealth. We can’t care for one another. We’d have to be vulnerable. We’d have to admit that we have trauma, that everything we’ve acquired was stolen, and what would we do with that? Who can look at that?
Astra: As I’m hearing you speak through all of the harm that has been perpetuated in the refusal to name the real fact of what has happened, it feels so parallel to this experience of moving through a system where people tell you again and again that nothing happened and it’s not real. There’s not much research that backs this—but of course it’s also so evident when it happens—when a doctor or whoever that has this position of structural power over you, who has been given a higher authority in storytelling than you have, when that person looks you in the face and says, “I am sorry that this happened.” It feels like a seismic, biological level shift. It can impact healing outcomes. I’ve read this.
I’ve thought about this so much in the context of Covid. The beginning of the pandemic was overlapping one to one with my own experience of coming into my own brain injury and the shifts in my life that echoed out around that—people weren’t there for me. The whole time I felt like, “I get that you can’t be here for me but also, I deserve a lot more.” And I was also failing in my responsibilities in those friendships because they had built relational expectations of me that I was never going to be able to meet at that time. It’s like this weight in my pocket when I step into those relationships now. We were so eager to rush out of this collective experience of pandemic-related trauma and so unable to hold it. It feels like we all just need to sit down with everyone that we love and say, “I failed you and I’m sorry.”
Amy: You just made me drop through the bedrock. That’s exactly right. I had never felt it the way I just felt it. Collectively, we all need to do that. We all got siloed in this pandemic. If you just take the experience of the pandemic—nobody is the same; nobody’s friendships are the same. On top of the pandemic having exposed what was not right to begin with.
Astra: This notion that you have to sit with reality and not wish it were different feels like such a sticking point to me as someone with a complex, chronic condition and an unclear condition. When I’ve done reporting on folks with Long Covid and other conditions that require them to kind of believe in the impossible AND accept the present—I wonder what role being able to actively do the not-wishing-it-were-different piece plays into simultaneously seeking out treatments that will make reality different.
Amy: I think it’s all in the nuance of being able to hold two things at once. You have to be like: "This is where I am, my brain is not working today, I’m just going to drop under it and feel my way through this day. I’m going to be in this day, broken and miserable and foggy. But I’m going to show up." You can devote so much mental energy to being like, “Oh my god, I need to get better, I need to drink coffee, I need to meditate.” When instead we need to take a breath and accept that this is where the body is right now.
In being able to fully accept where I was at any given moment, it actually opened the more creative parts of my brain. It was being able to fully be present in the moment that allowed me to access possibilities, innovations, and complexity, all the nuances of it, in a way that helped me get better. It allowed me to put two and two together in a way I hadn’t before. You feel terrible today, but you don’t know what’s going to come out of being fully present in this moment as you are today.
Have you ever heard this parable? There’s a man in the country. His horse runs away. The neighbor says, “Oh, bad luck,” and the man says, “Good luck, bad luck, who knows.” Then, the horse comes back, but he brings a new horse with him, and it’s an even better horse. The neighbor’s like “Oh, well, so it is good luck!” The man replies, “Good luck, bad luck, who knows.” His son rides the new horse and falls off and breaks his leg badly. The neighbor says, “Oh, that’s terrible luck.” The man says “Good luck, bad luck, who knows.” And then, the army comes to town and conscripts all the young men to go to war, and his son is left home.
So not getting caught up in the story of the illness or injury is the thing. Can you stay so open in the experience of it that anything can happen?
I don’t know if I’ll ever be fully healed. I’ll probably always have limitations. But the gift is that I learned how to look at all of it head on, and believe that I could live with it, while also reckoning with what it was that I deserved, and what we all deserve collectively.
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