Hello Loves,
Recently I appeared as a guest speaker for a group of nephrologists-in-training. This group calls itself Kidney Club and has rotating guest speakers come through to talk to the students about issues relating to the treatment of kidneys and communities. I have appeared at Kidney Club twice now, and it's been a wonderful experience both times. It is wonderful mostly because one of my favorite things is talking to people about my family. But it is also wonderful because people who are learning to treat the disease I inherited, polycystic kidney disease (PKD), have a challenge that is unique in the treatment of many chronic illnesses—the challenge of genetic inheritance and its psychological impact on patient survival.
When you are born into a family with PKD you have at least a 50/50 chance of inheriting the illness from one of your parents. You have the experience of being raised by someone who inherited the disease from their parent. You have the potential of passing on the disease to your children. I've spoken before about this kind of time travel, this telescopic relationship with the body and history. It's complex. It gives folks who live with the disease a long view that can be liberating or maddening or sometimes both.
My doctor is an incredible teacher and researcher as well as a clinician, and when she teaches her young nephrology trainees, she tells them that when they walk into the treatment room of a patient with PKD they are entering a space that contains the patient’s entire family. I've never met a clinician who was so clear-eyed about what we bring into a treatment room, the way that our ancestors trail us into space, the way that every decision rumbles out towards the next generation, the way the decisions of one’s ancestors shape your path, the way that having the disease creates poverty and sorrow and complex lineages and failure.
When I was speaking to the young people at Kidney Club, many of whom my doctor is training, they already knew that time travel was part of my story. I ran through the details of our history, and the way that each generation had different life expectancies, different personal expectations. I talked about how my father’s siblings all decided not to have biological children because of the collective weight of the trauma of that history. I talked about how I decided to have a biological child. I told them about how I learned to hold mourning and rage and fear all inside my story and choose to value my vulnerable life anyway. I told them about my memoir, The Mourner’s Bestiary, coming out in October of 2024, and about how I had to write through these things for five years before I really understood why I believed that there was a key to understanding our emotional response to ecological collapse in the story of my family, in the lessons of almost two hundred years of people wrestling with an illness that cannot be cured and will likely be faced by your own children. Because isn’t that what we’re all living through, the time travel of collapse?
In telling them the story of my family, I spoke about the incredible differences in the technological approaches to treatment of PKD that I have been privy to in my exposure to all these generations. Things are very different for me as a patient than they were for my father or his father, who died without ever benefiting from dialysis.
One student at Kidney Club asked me, “Do you feel that your hope for the future of your illness comes because of the advent of new technologies? Is it tied to technological improvement?”
No one had asked me that before. But the question is similar to what climate justice activists, scientists, policy makers, anyone working in relation to collapse, gets asked—Are you more hopeful because maybe we’ll find a technological fix for ecological devastation, plastic pollution, planetary warming, biodiversity loss?
Even though I had never been asked this before about PKD, I said the first thing that came to mind—or rather, the first thing that came up from my heart, from my spirit, from the work of fighting to believe that my life, my endangered life, is worth saving.
I said, “My hope isn't tied to technology. My hope is tied to people who work over generations to protect vulnerable lives like mine.”
What I meant was that my hope isn’t tied to the new drug I take, the first treatment for my disease, approved by the FDA only in 2009, any more than it is tied to transplant technology or dialysis or any treatment in itself. Those treatments have changed the lives of my family, transformed the futures of millions of people around the planet, but they aren’t what causes me to feel seen and held, they are just technology. Technology changes, it isn’t always beneficial, we get things wrong, we lurch and step back, there isn’t any magic in it. I have hope because there are, even now, researchers working to find new methods to treat and heal and cure and prevent the disease. I feel the same thing in my work writing about ecological collapse. It is the energy and rage and care and mourning of the people who fight for the vulnerable human and more than human beings caught in the teeth of crisis that give me hope.It is the people. The technologies themselves will come and go, and they will change, and decades from now, we will think that what we're doing at this moment is deeply barbaric in response to the crisis in the bodies of PKD patients or in the ecosystem. It isn't the technology that changes things. It's the intention, brilliance, resourcefulness, and dedication of people who value lives like mine that change our futures.
As a nature writer, especially at this moment—when COP23 is about to take place in maybe the worst of locations, when a terrible war is unfolding that is further devastating a region already under pressure of climate collapse, when we enter an election year that could be disastrous for my country and the globe, when terrible elections have just unfolded in the Netherlands and in Argentina—it is easy to think that we must tie our hope to outcomes, to technologies that wait in the wings, to individual laws.
But I feel deep in my cells that this is not the way to nurture the hope we need for the fight. It isn’t the technology; it is the people. It is easy to say this to the young people in Kidney Club, to my students, or audiences, or readers; they need to hear it, they soak it in and it soothes them. They are already working so hard. They are all afraid. They need to remember they aren’t alone. We can face the worst together, and we must.
My father’s family sat together at holiday dinners and told each other stories about dialysis or surgery or medicine, about how whether they would have biological children or adopt or raise their partner’s kids. Then they made jokes that helped each other go back out and fight for their own lives and the lives of other people with PKD. I’ve been in bars with climate journalists talking together about huge coalmine fires, and salmon habitat loss, and the fight for Indigenous land rights. Then they made jokes that helped each other go back out and fight for their lives and the lives of others.
I’ve seen both communities heavy with pain, with mourning, but I’ve seen them lighten because they have each other and humor and good food and community. They don’t lighten because we found a cure, for ecological collapse or incurable disease, but because they know they are accompanied—by doctors and healers and those that love them, by scientists and advocates and politicians and activists and conservationists and neighbors and those that love their beloved places and the beings that live there. We need reminders that people are working to save each other. That’s how we survive.
“It isn’t the technology that gives me hope,” I told the Kidney Club, “it’s you.”
I’ll write more soon.
Love,
Eiren