Living Through the Unlivable
What chronic illness can teach us about living with climate grief
“But this is how time iterates itself for everyone, I know, I know, by hacking us to bits—”
-Lucia Perillo, I’ve Heard the Vultures Singing
We live in an era of breakdown and change, much of which is happening at speeds and in forms that can feel beyond our individual power to grasp or influence. So we use words like ‘unprecedented’ with great frequency, to mark our uncertainty about what may happen in the future. We are so uncertain, it seems, that many can’t see a future at all.
I think the rhetoric of the youth climate movement is exemplary here, as it emphasizes trying to save—not given places or people—but simply “a future,” as though time itself will cease should we miss the mark on temperature or emissions targets. It’s not meant abstractly; I’ve heard young activists talk blatantly about how they “won’t have a future” if various campaigns are unsuccessful. Is their assessment of the gravity of the broader planetary situation accurate? Yes, undoubtedly. The tone is petulant nonetheless.
I do not mean that unkindly; I have participated in and supported some of the climate strike efforts. They have been worthwhile. Yet surely we know the future will keep rolling out. The issue is, rather, that its shape will differ dramatically from the picture many hold in their minds, a picture some took as a promise. There will be fewer fulfillments of the dream images sold in popular media, little repeat of life in a manner duplicating the last few high-consuming generations.
It is this, I think, about which many feel bitter, and why I use the word “petulant,” as the attitude is based in jealous comparison. From that place of bitterness, the slogan of “no future” becomes easier to accept, as a kind of placeholder, than the reality of “a different and difficult future.”
This veiling of our own vision strikes me as strange. For the task of accepting a difficult future—or a future drastically divergent from one’s initial imaginings—is, all told, a fairly ordinary human experience.
That many communities have already lived through the destructive alteration of their futures—or through deadly pandemics—while the world has kept on moving is a point that has been made often, especially in anti-colonial/decolonial discussion spaces. I think it’s possible that we do a disservice to ourselves and to the courage and strength of many who have had to complete that task by constantly painting the current moment as so extraordinary, whether we feel the state of exception to be our changing climate or the years shaped by COVID-19.
Yet we don’t even need to escalate the conversation to the level of pandemics or genocide. The experience of an altered future is, in many ways, much more mundane than that. We might do well to consider how others have managed such common difficulties.1
This week I’ve been reading I’ve Heard the Vultures Singing: Field Notes on Poetry, Illness, and Nature, a set of essays by the late poet Lucia Perillo. (How could I not pick this up at the used bookstore, only days after writing about vultures?)
Perillo was both young and adventurous the year she was diagnosed with multiple sclerosis; she did not accept this change in fate quickly or easily. From the opening essay:
The day after the doctor told me what had gone wrong with my body, I went skiing alone on Mount Rainier, where just a few months before I'd worked as a back-country ranger and had mastered the art of making those delicate telemark turns that require dropping to one knee like a man proposing with a ring. The new snow was thick and wet, what people call Cascade Concrete, and avalanche warnings had been posted at the ranger station. I had a dramatic idea about dying in an avalanche as I skied down the saddle between two peaks in the Tatoosh Range. To be packed like a supermarket fish in snow—I wanted to ride out of the world that way, and I drove home feeling a little disappointed about not being dead (but exhilarated, too, about having outwitted my bad number).
That last sentence included the kind of sentiment (I was a little disappointed about not being dead) that comes off as anti-social, living as we do in an age that mandates soldiering onward in the face of illness. The sick tiger walks the length of the bars in her cage in the zoo as if nothing's wrong, and we humans ask each other how we're doing every day; as a chorus of millions chants, Fine. It's as if we have transposed the animal imperative not to expose our weaknesses, from body-language into words.
But to resist enlisting as a brave soldier in the battle against one's illness—to choose instead burial by avalanche!—seems to me to be a typically human and honest response (or the honest response of one typical sort of human) to the news that one's life might be marked by faster-than-normal physical decay. The doctor's operative word was might, and the uncertainty was what I found unbearable in those early days when I hunted for a story or a portent in any form—tarot cards or tea leaves—to tell me about my future.
By the time we meet Perillo, the disease has set in; the uncertain future becomes her present reality.
Many of the essays detail her attempt to interact in a changed way with her expectations about nature and wildness, as her experience shifts from taking long solo tromps in the backcountry to connecting with the world of creatures inhabiting her small city, viewed primarily from her wheelchair. She makes attempts to track these as a naturalist would, learning names and focusing on identification, what she refers to as “knowledge games.” In an essay on observing bats, she writes:
“I’ve been playing these games to plug the holes where I’ve been torn by what my Buddhist therapist calls the waterfall of jealousy and grief. How bats are supposed to make me not resent my friends who head off to camp in the mountains.”
Is this not where so many of us reside just now? A waterfall of jealousy and grief. Jealousy at prior generations (heightened by all the manufactured intergenerational divisions stoked by click-seeking media outlets). And grief, not only for our own future lives and our many unfulfilled desires, but at the clear loss of life for so many other beings.
Yet within that—what makes it so hard to step out of the waterfall and dry off in what sunlight may be available—is the uncertainty. How long do we have? When might things truly break down? When do I really need to cease living as I am living? Can we make enough change and if we can’t should I really bother doing anything? Ought I have children? When will wildfire hit my town? Maybe it won’t? Can I avoid climate calamity simply by moving?
True, many of us also let such questions sit buried deep below the level of daily awareness. We’re distracted enough by busy schedules, or sense we don’t have the capacity to process it, or maybe we’re benefiting just enough from the current order of things—we may have financial means, or a moderate level of professional success, things we don’t want to give up—and so we push it all down and away, try to ignore the fear and any destructive impulses that may accompany it. We do not wish to admit either that we are scared or that we might be desirous of burial by avalanche. We suspect letting such emotions surface will not be pretty. Maybe I’ll grow old and pass away in ease before the pain gets serious.
This emotional avoidance allows us to evade directly attending to the diagnosis we’ve already been given. In the summary of the latest IPCC report, the sentences describing the impacts of climate change are mostly written in the present tense.
This too, is why the “no future” language doesn’t add up: we are already living in it. Part of that future has slipped into the recent past. As the summary states: “It is unequivocal that climate change has already disrupted human and natural systems.
“How do we go on when the body’s breakdown becomes impossible to ignore?” Perillo asks. This, while approaching her 47th birthday—“older than I ever thought I’d be,” she adds. (Perillo lived for yet another decade, dying in 2016 at the age of 58.)
There is more recognition now of the breakdown of the very body of the world than we have ever had. The headlines after the recent IPCC release were surely the starkest I’ve seen. Take this one from the AP:
Still, much of the language of this story and others continues to be written from a perspective of “holding off the worst” of the consequences of greenhouse gases. It’s a language of avoiding change and breakdown, not one of facing up to it.
Might we, and should we, continue our efforts to stave off the worst? Of course. In the face of a serious diagnosis, one tries to get well; if one’s habits or environmental conditions exacerbate the symptoms, one ceases or avoids them; if no good treatments yet exist, one investigates those newly in development.
But ultimately, as those living with chronic illness understand, one must also seek ways to live a full and meaningful life, even if one’s world has become more limited in scope.2 One must live through what once seemed impossible to bear—through the unlivable. Through the circumstances that make death by avalanche feel, for a moment, like a preferable option.
This is largely what I’ve Heard the Vultures Singing is about. Yet it offers no saccharine account of peaceful reconciliation with her condition, no tortured Panglossian logic in which her later life is “the best of all possible worlds.” Perillo is direct about both her physical and emotional pain, clear about what she believes she is missing, what she might have had. She never ceases to wish that she might be hiking through the woods rather than riding her electric scooter; her desire does not leave. Yet she learns to use the scooter.
She also remains resolute in her efforts to stay in connection with prior forms of joy to which she once had easier access. “Birdsong”—the essay that eventually gives meaning to the book’s curious title—documents her attempts to get closer to the birds living down in the ravine behind her house, despite its steep and treacherous terrain. Her friends refuse various suggestions and plans, give excuses. But she finds understanding from her husband:
Jim sides with me when it comes to the ravine: he does not think that wanting to enter it means that I’m grasping desperately for what I can’t have. He thinks that trying to come up with logistical solutions is a means of refusing to surrender. Desire is good; it leads us on. Our happiness should be greedy, should make us want more of it.
For her birthday, Jim hires a team to clear and build a trail to the ravine. The contractor is dubious but changes his mind after the project is completed: “Ah, I see—at first I did not understand. But it is like Mt. Rainier. All you need is a waterfall.”
Jim then carries Perillo down the trail, and for the first time, she can view the birds whose songs she has been trying to learn and identify, see them right at eye level, with no twisting about in her chair. A nuthatch and many tiny wrens, all within reach.
What do you do when you are unsure of how long there is left? You identify the joys that are in reach, and pursue them. You craft the world, as best you can, to give your beloved moments of unexpected delight.3
The trick I think we need to master, to better face our altered future, is this: to keep our happiness greedy, without being petulant.
Just based on watching others around me, this doesn’t seem to be easy. No wonder our young people struggle with it. What examples have they to watch?
We will all have wants, and desires, even as our world undergoes radical transformation. Our delights may change—by many measures, should change, especially with regard to material consumption—and look quite different from what brought joy in ‘before times,’ times where either one’s own body or the world itself were not so threatening. We may still long, grievously, for certain entertainments which we once had or allowed ourselves. Yet that difference does not mean that joy or pleasure or beautiful acts of tenderness cannot be had. It does not mean, most of all, that there is no future.
What if our task, right now, is not resistance (or at least not only resistance), but the building of trails to delights which we might still share with our beloveds?
There is a moment to stand in the waterfall of grief. To stay there, however, is to never know the unexpected strength of our companions and the unanticipated pathways to joy, even when pain creeps up our limbs, even when all the capacities and circumstances we once took for granted have changed beyond recognition.
I have no doubt that the future will be difficult. I also know that I do not wish to live through the upcoming years either in a state of denial, or in a state consisting only of fury and grief, jealousy and fear. Not that those emotions will be absent, but I am seeking ways to look them in the face, that I might also look beyond them. I am looking, as well, to learn from the many, many others whose lives are models of grace in the face of affliction and altered hopes. Such models are everywhere. They might be those who have suffered battle or famine. They might also just be poets who can no longer walk through the woods, though once they loved to do so.
If you’ve made it this far, thank you for reading. This essay came about after I found myself avoiding conversations about the IPCC’s sixth assessment report, certain that internet outrage and hot takes were not going to help me process the clearly blunt description the scientific community finally produced together. I found an unplanned source of help in stumbling across Perillo’s book at the local used bookstore, which finally nudged me into beginning to read our collective “diagnosis.” In many ways, I found it clarifying: this is just where we are, folks. These are just our times. If you’ve been in a space of uncertainty or prolonged grief regarding climate and ecological change, I hope that this was useful in some way. I don’t yet know if I quite have the tone as I want it, but it’s about time to send this out, so we’re ending here.
If you haven’t yet had a chance to sit with the last report, I think the North America Fact Sheet, though still in technical prose, a good starting place, as it’s concise and short.
These are just our times. We can still be “greedy” for happiness, and let our desires fuel us to create what needs creating. Dig in and build a trail where you can, and take a rest to look at the wrens when you need.
Until next time,
Meg
I could have written this essay in a completely different way, using the present war in Ukraine or many of the other ongoing violent conflicts around the globe as an example, or any of the many, not-so-far-away 20th-century atrocities that we seem, with every passing day, to think less about. I’m not, because we still seem to consider these events as “exceptions,” (though we might question that) and I’d like for us to question, not the intensity of the problems around climate and ecological breakdown, but the notion that they represent an exception to what humans have had to handle within our history.
I hadn’t quite realized, until reading Perillo, that my own mental model of how to respond to climate change had already largely shifted from averting an impending crisis to living with a chronic illness. MS might not be the illness most suitable for this metaphor, but I’m not sure the specificity is important. What is relevant is how we think about chronic illness more broadly, which is receiving heightened attention given the presence of long COVID as part of the pandemic. There’s a new book out by author Meghan O’Rourke, who suffers from chronic illness herself. In a recent interview, she talks about this changing narrative:
The biggest change for me was that when I got sick, I was focused on getting better. That was my primary overriding focus: “I’m going to get better. I can’t live this way.” And that is not something I ever think about now. I never think about getting better. I just think instead about how to live with what I have. It’s a shift from a recovery narrative to a … radical uncertainty and acceptance of that uncertainty — a kind of insistence on the reality of that uncertainty.
Did I cry while reading about this effort Jim made on behalf of his wife? Absolutely. And once more while writing this.