What the World Asks, What We Give: Energy, Learning, and Suffering

Or: I Bolted My Head Back On. Now I’m Writing Again.

I’m a math and science journalist and the author of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand (Rodale). In that book, I described my experience with myalgic encephalomyelitis (aka ME or ME/CFS) and my remission through the rather bizarre and nearly unbelievable method of taking extreme measures to avoid mold. I published it in 2017 and did the usual publicity — interviews, talks, the whole circuit. And then I mostly vanished.

I vanished because I got sick again — sicker than before, sicker than I could have imagined. I’m not ready to tell that story in full. Even now, when I try, I wither. But here’s a capsule summary: My neighbor’s house flooded, and mold blew onto my land and sickened me. I fled to a van in the wilderness. It helped — but not like before. Eventually I discovered that inflammation from mold exposure had degraded the ligaments in my neck, causing my skull to crush my brainstem. A surgeon bolted my skull back in place. That also helped, but then came more complications, more surgeries. The story twisted and became hard to follow, even from inside it.

There were stretches when I couldn’t be left alone, when I had seizures a dozen times a day, when I couldn’t bear sound, light, or motion. A bit over a year ago, I spent two and a half weeks curled in a ball, unable to think or move without further injuring myself.

But things have been improving — slowly, unevenly, but steadily. I’m back living in my own home, the one I built with my own hands at the beginning of Through the Shadowlands. I’m fragile, and I often feel unwell. But most days, I have a few hours of moderate functionality. It’s not much, but it’s more than I’ve had for a long time. The aperture has widened, and I have, at last, enough space to have a life — a small life, but one I can occupy and embrace. And with it, enough room to write, I hope.

This newsletter, The Weighing, is a way of stepping back into the world.

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What you’ll find here

I want to give myself a lot of room to explore, and I hope you’ll come along as I do. Three topics will almost certainly show up regularly.

1. The clean energy transition — especially in New Mexico

Fossil fuels are our inheritance — primordial forests and ocean blooms that captured sunlight long ago and condensed it over millennia into combustible packets of energy. This coal and gas and oil has given us comforts our ancestors could hardly dream of, but the gift carried an unseen threat: waste gases that bend the climate out of balance. Now we’re swapping ancient encapsulated sunlight for the living light that falls fresh each day. This is the clean energy transition: turning from the fossil fuels we inherited to the clean energy we invent.

The energy transition is underway, and it can’t be stopped, no matter what happens in Washington. Wind and solar are just so darn cheap — they outcompete any fossil fuel. The problem is that while we’re adding tons of renewables, so far, we’re not burning less fossil fuel. The world’s hunger for energy keeps growing, and with AI, it’s only accelerating. The question is then whether the technology develops quickly enough that it makes economic sense to leave the oil and coal and gas in the ground. Every pound of fossil fuel unburned matters to the planet.

I’ve been interested in clean energy since my twenties, when I built my highly efficient strawbale house. Back then, much of the technology I wanted was out of reach. Now, much of it is ordinary. Watching how we’ve come to be able to heat our homes, drive our cars, and run our industries without fossil fuels has been astonishing — and the pace is still picking up.

When I was beginning to crawl out of the worst of my illness and could safely think only in very controlled measures, I was desperate for some kind of input and I started listening to podcasts on the energy transition (especially David Roberts’ Volts — thanks, Dave!). They became an unlikely lifeline. Their gentle optimism soothed my wounded brain. Even when I couldn’t follow the details, their voices kept me company. Gradually, I learned what’s working, what’s being blocked, where the momentum barrels forward.

What I don’t know yet is how the energy transition is playing out in my beloved New Mexico. In the years ahead, state and local efforts may matter more than anything happening in D.C. I’m not approaching this either as an advocate or as a detached reporter. I’m someone who cares deeply about this transformation, and I want to understand how my home state is moving from buried sunlight to fresh — and to share what I learn with you, here.

2. Education — and the place of liberal education in public life

I’m an alumna and former faculty member at St. John’s College in Santa Fe, known for its Great Books program. The college kind of saved me as a young person — I found my way there when I was 15 after quitting high school and then being out of place at other colleges. I was a weird kid, very smart, very mature, and very intolerant of being asked to perform for others. At St. John’s, I found a community engaged together in work worth doing: reading texts that asked fundamental questions about human existence and the universe that we live in, and then thinking about them together. It was my first intellectual home.

Years later, I began helping the college’s president, Walter Sterling, bring the St. John’s way of learning into the wider debate about what education is for. With my support, he’s published several op-eds, with more to come. You’ll see some of that work here too — and more reflections on how liberal education can help when the world is pulling itself apart.

3. Chronic illness — especially severe myalgic encephalomyelitis

This one’s harder. People have told me I should write another memoir, picking up where Through the Shadowlands left off. But the truth is, I often feel like I have nothing left to say, beyond: it sucks it sucks it sucks, the end.

And yet — this is the experience that has shaped the past seven years of my life. I’ve survived it, in large part, because of friends with severe ME — people I’ve never met in person, many of them still far too sick to speak or move. They’re too ill to tell their own stories. And the people who care for them are too overwhelmed. Very few others even know they exist.

But I believe they — we — carry a wisdom that we all need right now. We’ve learned to survive unimaginable suffering, to live within crushing constraints. Many of us have even managed to create lives of meaning (which, despite Maslow’s hierarchy of needs, feels as essential as air). There’s the philosopher who, during the five percent of his time that he is able to sit up, makes YouTube videos considering current events from a philosophical perspective; the public policy expert who has shaped Long Covid policy even though she cannot speak; the dancer who now dances with his hands from bed.

But I’m equally moved by the smaller, less impressive meaning-making: the mother who strives to be able to physically tolerate her daughter’s presence in the same room; the woman whose poor, hurting animal body can nonetheless take in the pleasure of the touch of sun on her skin; and, frankly, the schmuck, who was a schmuck before they got sick and is a schmuck now, but nonetheless manages to survive each day with some hope the next one might hold a bit of mercy.

These are my people.

And the truth is, all of us now are facing the possibility of suffering we’re not sure how to survive. So at this moment in particular, I suggest we pay attention to those who live what others only fear — to witness, honor, and learn from them.

I won’t promise how much I’ll write about severe illness. But I hope I can find ways to speak about it that are bearable, and hopefully useful.

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This is a place to weigh things: ideas, costs, possibilities, limits, and what matters most when things are hard to measure. I chose the name from a Jane Hirshfield poem I love, and I’ll leave you with it here:

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The Weighing
by Jane Hirshfield

The heart’s reasons
seen clearly,
even the hardest
will carry
its whip-marks and sadness
and must be forgiven.

As the drought-starved
eland forgives
the drought-starved lion
who finally takes her,
enters willingly then
the life she cannot refuse,
and is lion, is fed,
and does not remember the other.

So few grains of happiness
measured against all the dark
and still the scales balance.

The world asks of us
only the strength we have and we give it.
Then it asks more, and we give it.

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