Two Systems in Collapse

What illness can teach us about responding to climate change

By Josh Nutall

It’s been a little while since I last posted — my health took a dip for several weeks. I’m pleased and grateful to be back writing. — Julie

Recently I came upon Emily Johnston’s essay Loving a Vanishing World, and it simultaneously skewered and inspired me. She is unflinching about the costs of climate change, taking in the whole picture of devastation in a way I frankly struggle to — I look away.

But Johnston doesn’t allow herself to either turn from the truth or to become paralyzed. Instead she does in the piece the emotional work so many of us struggle to do ourselves, and she issues a challenge: Use whatever leverage you have — even if it feels puny in the face of saving the world — and act.

Reading it brought up two responses for me: First, I felt, I am not doing enough. And second, I felt an eerie kind of comradeship. In the community of those suffering with severe myalgic encephalomyelitis — an illness that punishes exertion and that can make even thought or touch unbearable — we, too, face devastation so great it’s hard to look at. Our suffering is so intense that many of us spend years motionless in darkened rooms because light and sound are excruciating. People often turn away. And yet somehow, we must not be overwhelmed. We have to do the same internal work Johnston demonstrates: facing what’s real, holding it without flinching, and then using our limited energy to sustain ourselves and one another. Our leverage is tiny, but it still exerts force.

I highly recommend reading Johnston’s essay in full — I feel forever changed by it. But here’s a taste. She begins the essay reveling in British Columbia’s shoreline, but she can’t rest in that beauty. She knows what lies beneath: a garbage patch the size of Texas, microplastics in every drop, fish populations crashing, phytoplankton down 40 percent since 1950. “The truth,” she writes, “is that the ocean that looks so beautiful and unchanging is well on its way to becoming a vast garbage dump full of plastic and of heavy metals, where little survives but jellyfish. It will not smell the same. Its colors will change. And most sea-birds, of course, will die with it.”

I know, I know, I want to stop reading too — it’s so painful that I want to pretend it’s not so, or tuck that knowledge into some deep recess of my brain. But keep going with her: “So I want to ask you the same question I ask myself every time I’m entranced by the beauty of this world: what does it mean to love this place? What does it mean to love anyone or anything, in a world whose vanishing is accelerating, perhaps beyond our capacity to save the things that we love most?”

These same questions echo in the experience of living with severe ME. This illness is also a collapse, in miniature. Every action must be metered, its value ruthlessly countered by its often brutal cost. You become acutely aware of your brain as a piece of flesh, one that must be managed and coddled to eke out a bit of functioning. Your existence flows through a straw that can be choked off to almost nothing. Even if you’re lucky enough to recover some ground, the life that has gone can’t be regained.

So the same questions Johnston asks about the planet, we ask about our bodies: What does it mean to love this life, when so little life is available to us? What does it mean to love anyone or anything when we haven’t the capacity to even engage with them?

Hope isn’t a reliable ally, as Johnston points out: “We cannot expect to feel hopeful, at least not very often, and having any particular hope is likely to end in heartbreak.” ME patients know this all too well. Most of us became severe only after years of treatments that failed. A few of us have an emotional constitution that allows for optimism with each successive effort, but most of us learn not to attach expectation to any one experiment. Instead, we practice a kind of hopeless action — we keep trying because trying itself is a form of faith, a muscular type of prayer. And even without expecting any particular treatment to work, we hold the possibility that something might eventually.

And sometimes it does. Sometimes ME patients have big improvements or even go into remission, as I have more than once. Similarly, sometimes climate action is spectacularly effective, as in Johnston’s inspiring story about climbing into kayaks and shutting down the Port of Seattle to delay Shell’s Arctic drilling rig. When the action only delayed the rig by an hour, Johnston wondered, “All of that work and love — for what?” But a few months later, Shell abandoned its Arctic drilling quest, in part because it was surprised by the protest and aware of the risks to its reputation.

But such victories are rare, and as Johnston writes and ME patients know well, “Faced with the knowledge of certain and devastating loss, sometimes it’s a struggle to breathe.” She goes on, “But the incredibly freeing truth is that life on Earth isn’t concerned with my sorrows, and those who are already struggling to save their kids’ lives or their homes aren’t interested in whether I’m grieving or uninspired. They need me to do something.”

The particular agony of ME is that it attacks precisely the ability to do something — anything. It enforces an involuntary self-involvement, when so much effort is consumed by the act of survival.

And yet, one of the things I find most inspiring in the ME community is how often people find ways to contribute to this world beyond themselves, even when they have almost nothing to give. Advocacy and supporting other patients are obvious and important strategies, but patients’ ingenuity is astonishing: writing a cookbook! Political commentary! Dance! The need to offer something to the world doesn’t disappear under duress; it sharpens. That offering is a thread that keeps us tethered to life.

I read Johnston’s essay at a time when her question already haunted me: How do you love what you can’t keep? I had just written an essay about my dear friend Beth Mazur — a brilliant ME advocate who ended her life while visiting me. Beth had poured her life into others: building systems of care, connecting researchers, challenging those in power. But she could no longer bear her own body’s demands.

Her suicide forced me to confront the same truth Johnston names: that sometimes love has to exist without hope of rescue. After Beth died, I found myself saying yes to her choice—not approval, but a willingness to accept her decision and keep loving her even through it, though I would certainly have said no if she’d asked. That strange act of consent loosened any judgment or resentment. It allowed me to center love even when saving is impossible.

I’ve come to think of that posture as holding an empty bowl, one wide enough to contain everything—grief and gratitude, ruin and resilience. It doesn’t demand resolution. It doesn’t tell a story with a tidy lesson where everything comes out OK in the end. It just stays open to the full reality of our world.

Johnston’s essay and Beth’s death converge on the same question: What do you do after you’ve looked at the devastation without flinching? Johnston’s answer is action. In the context of ME, the action is often so small one could miss it entirely. It lies mostly in simply keeping going.

For myself, I now have a sliver of aliveness beyond mere survival. I constantly ask myself how best to wield that sliver. For now, I’ve chosen to use it on this Substack. It lies in my personal Venn diagram of what I’m good at, what the world needs, and what brings me joy — and, critically, what fits within my current capacities. I figure that the world needs the devastatingly hard-won wisdom of severe ME patients. It also needs knowledge of what’s happening in the energy transition at a local level.

But I continue to wonder. Is writing my little Substack, with fewer than a thousand subscribers, really very effective? Should I be doing more direct advocacy? Should I be creating structures of support like Beth did? Something else entirely? These are questions I just have to keep asking.

And yet — this is the practice, isn’t it? Loving what’s vanishing requires acting without knowing if it’s the right action, choosing without the comfort of certainty. You hold the empty bowl wide enough to contain doubt, smallness, the possibility you’re getting it wrong.

The discipline of ME — and of climate response — is to keep going, even when the realm of action is far smaller than necessity demands.