The following is an excerpt from Stephen Jenkinson’s new book Trembling, Still (Chelsea Green Publishing July 2026) and is printed with permission from the publisher.

Editor’s note | Written in the wake of a Parkinson’s diagnosis, Jenkinson’s reflections move beyond the familiar language of inspiration, recovery, or heroic overcoming. Instead, Trembling, Still becomes an inquiry into limitation, mortality, dignity, and what remains when the illusion of mastery begins to dissolve.

Scaffolding

The onset of disease brings out the barrister in some, the sorcerer in others. ‘If you can, you should’: that’s the moral code of the med-tech regime, the haunting, looming Materia Medica of the tech-besotted. That’s what the illusion of life mastery sounds like: a mound of spent possibilities. I was not immune, it turns out. At a loss and nonaligned, I tried. That’s the last ten months: trying.

Years ago, I was surprised to find that a room full of educated people at the Orphan Wisdom School divided neatly along generational lines as follows: the older people were either dismissive of, or spooked by, the advent of artificial intelligence. The younger people took it as a given, and were weirdly impressed more by the ‘near real’ of the artifice and its phantasms, and grew passive the nearer they drew to ‘reality’.

‘Real’, though, happens because there are limits, not because everything’s possible. The borders and edges are where you work your fate. The slow-motion dissolve of disassembly  – neurodegeneration  – is where you work the handshake deal you made when life seemed mostly possible. It’s the walk you take through the ruins of Maybeland. When the novelty of crisis wears off, it’s worn off. The debris, the sand, is in the hourglass. By now I’d ‘tried.’ I was crossing palliations off an imaginary list. Ten months ago I felt preyed upon, sought out and hunted down. Ten months later, I was trying to figure out how – or whether – to occupy an ordinary life that at times seemed to be a rattled cage, at other times a fallow field.

I took pride during my sojourn in the death trade in making a language to speak with dying people where the realities of dying survived the utterances, platitudes, bromides, hopes, laws, prejudices, untutored sufferings so often brought to bear upon them. Now I seem to be having one more go at that kind of word work. But I can’t untremour uncontract, ununcertain the measure I take of things here. Or I won’t. Looking back, you want to straighten the lines you drew. But that’s not what neurodegeneration is. It isn’t straight lines. That’s the deal I struck with writing things down. That’s the ‘neuro’ part of the thing. It’s not a limp, or a trembling. It’s what’s left of what I’ve got, as grey matter goes white.

Now, this is where I’m working out what kind of intelligence – moral, ethical, aesthetic, semantic – I’ll be left with.

29 October

Am I hopeful?, I wonder.

About what?, I answer.

Am I hopeful that the diagnosis is wrong?, I wonder. ‘No’, I say.

Hopeful that the prognosis is unnecessarily occluding and bleak?

That’s akin to asking whether I hope that what’s happening isn’t happening, that all down the line it’s an information problem, an occasion of that famous assault of misinformation we’ve got in high places and low. It’s unlikely that the diagnostic systems are in tatters enough to have placed me at the wrong stage of my life.

Am I hoping for anything? I don’t think so. Any skill or capacity I might hope for I think I’m working on now. Or I should be.

—

I’m thinking again about what being hopeful does for people who are in for it anyway. I think you occupy yourself in the work of not being who and where you are when you hope. An alternative: you occupy yourself in a citizen’s work, the work of seeing things for what they are when you’d want otherwise. I wouldn’t know how to show up for duty and occupy this life as it is and – at the same time – hope that this is not required of me, that this isn’t my little life, too.

In my best moments – there aren’t so many – I am a man afflicted in his health, not so clearly healthy in his affliction. Hope strikes me as it has for much of my life: a laying on of hands upon the allegation of a future to secure a foothold that looks like a present, one I don’t have.

31 October

Speaking of disguises: does there come a time when I go from ‘this is what they told me’ to ‘this is what I am trying’ to ‘this is who I am’? Is it best to get to the third thing quickly? Is there a skin to shed? A skin to wear?

Where is the line that marks me as having happened this way now? Is it different from going through a windshield? Is the shakes my catastrophic mutilation? My wheelchair-assisted living? My handicapped parking privilege? My differently abled?

I fretted that the ibogaine could prompt psychosis. That was a considerable fear. I prize my mind, as it is – which prompts all kinds of fixity in a time that recommends moving like time moves, like a breeze in afield at dusk moves.

No psychosis to report, no unravelling. The meagerest of insights, and no noticeable restoring of the myelin on the nerve endings – which, given the psychic enormity of the ibogaine encounter, is hard to credit. It was so enormous I opted out of a last morning dose of toad. I felt like I was playing with fire. I wonder about that now.

—

There’ll be no prevailing here, my son

There’ll be no foresight to banish the unruly

No intoxicant, no tidy chant to lift the heavy, dark wing.

This is what I am, now

Trial and fire and error

This is what has come.

11 November

The soot-grey light of earliest dawn has come stealing. The duo-chrome of the days’ gathering is so silently here. With the leaves down, the tree silhouettes are distinct. Splayed as hands are when pleading skyward in rapture’s indecision, they are the truth test of what endured, what agreed to stay in another kind of dark. A duck on the river now sheds the night’s timidity, the risk taken by those mated for life in this, the hunting season, when camouflaged death dealing is in the rushes and the weeds. The closest trees are pushed forward by the two-tone contrast, black out of the grey. Another day’s overture wicks away this eleventh-month twilight, and the orchestration of remembrance has come, the scrim for fortune’s tally, the eleventh of the eleventh. And in the time it’s taken to describe all this, it’s gone, an orange streak in the east.

—

On day one of the official diagnosis, almost a year ago, the neurologist talked briefly about ‘dopamine deficiency’. He said that I had a compromise of  – and here he made air quotes  – ‘the joy chemical’. Jesus, I’ve walked around with a sense of personal failure when it comes to joy every day since. But I don’t think it’s joy that’s compromised. It’s some-thing closer to initiative, anticipatory engagement with the possibilities, the feel of being drawn by the current of life, the quickening of it, the keenness. Maybe joy’s an offspring of the keenness. You’ve no idea how rudimentary those things are to your little life until something turns the tap off, the volume down. Joy scarcely stands a chance when these mechanics of joy are brought low.

For a full seven days, I’ve gone without recourse to this book. For the first time in almost a year, I let this book go. I was nagged by the habits of conscience a few times: ‘Get to it’. I see now that this was those joy mechanics in abeyance. It was like how I am sometimes with the supplement array. When your life becomes ground zero for remedial strategizing, some part of you takes a step back. I must have been objecting to this book, objecting even to the discipline I’d agreed to, the regime of reflection I’d signed up for, the work of seeing and bearing faithful witness.

But I didn’t even see that. I just stopped writing for a while, without having decided to stop. Yesterday my wife went down to the writing shack to fetch a lectern that would allow me to stand for the podcast Never Land / Sever Land I am due to give with Kimberly Johnson. After a few minutes she came back with this very green book in hand. I looked at it, had no idea in that moment how she came by it, what was happen-ing. She gave the book to me and said, ‘This was outside, on the porch of the cabin. I don’t know if it’s still good.’

Seven days in heavy weather. The ink didn’t run.

Seven days in the wild. The bindings held. The paper didn’t curl, didn’t delaminate.

It is a portent. It is something merciful. The timing of her going down to the writing shack, the lack of rain in what is commonly a rainy time: merciful. Timing: it is God’s middle name this time, not God’s middle finger.

Let’s see if I’m still good, if I can hack the suburbs of my habits, while my wife finds what I didn’t know I’d lost.

15 November

I now have a forty-year-old child in the world. Our way of life – this liberty fantasy of North America that we count on – has marauded across her well-being, as it has so many of her generation. I’ve hectored and extolled so often for their sakes. The stakes are always high, but it isn’t so clear I’ve done well by them. I was out on the barricades for decades, and meanwhile my own kids were ailing with the malady. Forty’s not young. She may set about ‘working on herself ’, but like me she won’t be able to start anew. So much of our hurt in these troubled times seems more personal than it actually is. Much of our hurt is cultural. ‘I haven’t liked myself sometimes this year’, she said – an affliction or a self-assessment I’ve rarely, if ever, consciously made. It isn’t as though you can be wrong about not liking yourself, so much as you might err as to your reasons why.

You don’t really ‘grow infirm’. There’s no growth in it, no increase. There’s no measuring negative space, I wouldn’t think. Still, something is amassing because of the disappearances, the gonenesses, the gracelessness of what’s left of the commons, and whatever that is, I do wonder if my children are old enough to see that happen without the world growing increasingly hard for them to be in. Whatever’s happening with me, the increments of sorrow are gathering in their lives. No matter what work I’ve done, that gracelessness in the culture is deepening.

How then was it supposed to be?

Most of the sorrow comes from the unexamined grudge, the secret one, that it wasn’t supposed to be this way. ‘Supposed to’ abandons you to the thinnest gruel of choice: take it or leave it. But ‘supposed to’ is something you do, something you pull on one leg at a time, that you hitch up and zip up and belt up, until it suits you.

That’s what I’d have for my kids: that this unspooling of mine would suit them, suit their ages and their lives, that they’d find a size of it that would smooth into a fine gait over time, inseparable from how they’d walk, and that there’d be peace for them.