Holding on

The days after

I'm writing these lines while charging my stimulator. The magnetic charger is resting on my chest, and the device underneath is doing its job. BEEP BEEP BEEP before it's placed... then silence. Until it beeps again, it won't be charged. That's the ritual: you plug the thing in, and you wait.

One hour. I have one hour ahead of me. Might as well write. It'll let me put my ills into words. That's something, at least.

The previous post ended the morning after the adjustment, in zombie mode, thirteen hours of sleep and a brain in shambles. This post tells what comes next. The days after. The ones nobody talks about, because they're neither spectacular nor dramatic, just long, blurry and exhausting.

Every adjustment has a cost. On the day itself, it's the adrenaline, the journey, the puppet, the tests, the exhaustion. The next day, it's the zombie. And then there's what comes after, and it's perhaps the hardest of all, because that's when you're alone with your brain, without the surgeon, without the programming room, without anyone to adjust anything. Just you and the sensations they installed in you, and the waiting for it to pass.

This February adjustment, the switch to full contact 1, will have cost me at least four days. Probably more. Maybe eight. Maybe longer. Impossible to know. Welcome to my life.

The first day

The first day after the adjustment is annoying, but nothing more.

I stayed home, working remotely. I tried to code, to prepare my classes, to attend my meetings. But there's a mental fog, like a veil between me and what I'm trying to do. The usual "ting" of my mind is off. That small flash of clarity that normally makes my brain work at six hundred per cent, where ideas hook in, where the code writes itself, where problems get solved before they're even formulated. Right now, I'm at ninety at best, and it's all jammed up in my head. I'm groggy. Apathetic. The right word is "switched off."

Nobody knows at work. I manage in silence. Misplaced pride, perhaps, but I don't like being openly pitied. I open up to people who ask, not to those who don't. Which means that most of the time, I open up to nobody.

You tell yourself it's the fatigue. That it's like the other times. That it'll pass.

It's always on the first day that you're the most optimistic. It's also always on the first day that you're wrong.

The second day

On the second day, things settle in.

It's a feeling of fever breaking. That very precise moment in a flu where the fever seems to come down, where you sit up in bed thinking it's over, it's done. Except it's not done. The fever is still there, underneath, and what you took for a reprieve is only a pause. And the pause doesn't pass.

And with it, the sensations. As if you were in a plane climbing in altitude. As if you were falling forward permanently. As if your head were spinning, but without spinning. It's in the head, thankfully, and only there, though the stomach sometimes tries to synchronise with the brain. Bad idea. It should do the opposite. Nausea, dry heaves, a diffuse malaise.

But, and this is where it becomes difficult to explain, it's only perceived. I'm not ill. I don't want to vomit. I have the impression of wanting to vomit. The nuance is invisible from the outside, but from the inside, it's all the difference: the body is working, the stomach is fine, and yet the brain sends the signal that everything is wrong. As with the falling forward: I'm not falling, but I have the sensation of falling. That's the cruelty of it. Everything is phantom. Everything is perception without substance. And it's no less real for it.

I tried to work. I have to start over three times to do something simple. I make mistakes. I start again. The fatigue tells me I'd better go to bed. I try anyway, because the world doesn't stop, and then I give up, because the brain does stop. It's the same mess as the previous adjustments, and I recognise it, and recognising it doesn't make it any more bearable.

The night

The Kiss Cool effect is the jaw.

The mint sweets that have two phases: first the sugary taste, and then, a few seconds later, the cold that rises and gives no warning. The adjustment is the same. The first day is the sweet. The night is the cold.

On Friday night, going into Saturday, it was the jaw that woke me.

There's that scene in Tintin, Capitaine Haddock trying to sleep and unable to decide whether his beard goes over or under the blanket. He tries over, it's no good. He tries under, it's no good either. He tries over again, and it's even worse. And it goes on all night.

My jaw is Capitaine Haddock's beard. I pull it down? Worse. Up? No better. I clench my teeth? It gets worse. I relax everything? It changes nothing. Except it's not a beard. It's tension, burning, pressure and aching, all four at once, in the mandibles and in the tongue, and there is no position, none, not a single one in the entire space of possibilities, that relieves anything at all.

Three hours. Three hours lying in the dark, motionless, trying things that don't work, listening to the silence of the bedroom and the dull burn of the jaw. And the brain, deprived of distraction, spins on nothing. On nothing, precisely. On the absence of grip, the absence of solution, the absence of anything to hold on to. And when there's nothing, the brain panics. Softly. Not a full-blown panic attack, not the kind that makes you leap out of bed, no. A muted, slow panic that rises like a tide in the dark and finds no shore.

First the irritation. Another thing. Then the anger. Why now. Then the fear, because the jaw is new, and what's new in this story is never a good sign. Then the panic, for a brief instant, quickly swallowed back down. And then, by attrition, the resignation. The brain needs to let go, and it finally lets go, not because it's passed, but because you're too tired to stay awake.

The third day

The third day is the "little something extra" effect. Because it wasn't enough to have the plane at altitude and the permanent falling forward, something had to be added.

The jaw. The tongue. Cramps.

Not violent cramps, not cramps that double you over. Dull, insistent cramps that settle in and leave when they feel like it. An invisible hand above the head pushing the jaw downward. Two pressure points on either side of the mandibles trying to crush it. And in the mouth, the tongue no longer quite knowing where to go, as if it were wrapped in soft dough.

This is new. The previous adjustments gave me dizziness, fatigue, fog, but not this. The jaw is unprecedented. And what's unprecedented, in this story, is what worries you. Because I think about what Karachi explained to me, about the internal capsule, about the corticobulbar fibres, the ones that control the face and the tongue, the very ones that turned me into a puppet when the current spilled over during the tests. If the jaw and the tongue are reacting now, between adjustments, it means the current is tickling something it perhaps shouldn't be tickling. Or maybe it's normal, maybe it's the brain adapting, maybe it'll settle down. Maybe. That word again.

Does it fluctuate? Yes. Do I know when it comes or when it goes? No. Great.

I can eat, so there's that. The fact that I'm also having wisdom tooth problems at the moment doesn't help, but that's life amusing itself by piling on the delights.

That evening, Saturday, I went out to see friends. I should have stayed home. I held out for a while, and then the fatigue and jaw pain got the better of me. I had to leave early, because otherwise I was going to fall asleep at the wheel. It's the kind of decision I hate making, because it confirms that the body still decides my schedule. You tell yourself you're going to make an effort, you're going to be normal for a few hours, you're going to forget the sensations and enjoy the people. And then the body calls you to order, and you go home, and that's that.

The strangest thing: in the car, the brain works perfectly. Driving is fine. No sensation, no fog, no jaw. A complete parenthesis. Why? No idea. And the moment I turn off the engine, everything comes back. That's how it is. The brain has its reasons that reason knows nothing of, and after an adjustment, it has even fewer than usual.

The fourth day

Today, Sunday. I slept from ten last night to nine. Then I fell back asleep until ten. Then until eleven. Then from four in the afternoon to six. I'm shattered.

This is not normal fatigue. Normal fatigue, you fix by sleeping. This one, you sleep and you wake up just as tired as before, because it's not the body that's tired, it's the brain that's working. It's recalibrating, reorganising, digesting, and it needs every available scrap of energy to do it. The body is in forced standby. You don't decide. You endure.

Between sleep phases, I try to live normally. And that's where you discover something strange: when I'm focused on something, when the brain is occupied, the sensations fade into the background. As long as attention is held, the carousel slows down. The problem is that it takes a lot of stimulation: for a brain that went through prep school, a disability and a PhD, it takes a great deal to keep it from having the time to think "oh right, the adjustment..."

Today, I talked about our wedding with Rose Marie. We're getting married in June. For three hours, the world was normal. We discussed concrete things, beautiful things, things that have nothing to do with electrodes and burning mandibles. For three hours, I was just a man planning his wedding with the woman he loves. We're long-distance right now, and those calls are all we have, and they're all we need. What makes me smile the most is when she smiles. When she talks. When she gives me her dreams. When she laughs.

And then the fatigue took over. I had to go lie down, get some air, before coming back to see her. Because even happiness has an energy cost when the brain is under construction.

Her life isn't simple either. And yet she's the one who keeps me going. I can't wait to hold her in my arms. Or the other way round.

But after the three hours of respite, the moment concentration drops, everything comes back. All at once. As if the sensations had been waiting behind the door for me to lower my guard so they could force their way in. And it's worse than before, because you'd forgotten for a few minutes just how much it was there.

Water in the ears and cotton wool at the same time. Behind an aquarium glass for vision. Soft dough in the mouth. The hand on the jaw. The pressure points on the mandibles. And since this evening, new arrivals: heat in the nose, a feeling of having water in it, like when you put your head underwater and breathe in at the wrong moment. Heat in the ears. A headache.

The inventory grows as I write. It's an absurd collection, a catalogue of sensations that have nothing to do with each other and that coexist in the same body, at the same time, and that all refuse to leave. After all, I'm voluntarily putting electric current in my brain. What do you expect?

The carousel

To understand what "the days after" are, you have to imagine a carousel. One of those fairground rides that spin too fast, at three hundred kilometres an hour, and that you can't get off.

Now, imagine that while you're on this carousel, you're functioning normally. You get up in the morning. You stand. You walk. You talk. Your balance is good. Your legs hold. Your hands work. From the outside, everything is fine. Nobody sees anything. Nobody can see anything.

But inside, you're on the carousel. You have the sensations, all the sensations, of someone going three hundred kilometres an hour on a spinning ride: the imbalance, the blocked ears, the stomach looking for its place, the head no longer knowing where up is. And it lasts. Not ten minutes, not an hour. Days. Maybe a week. Maybe more.

That's the cruelty of it. Everything is perceived. Nothing but perceived. You're not falling, you have the impression of falling. You're not nauseous, you have the impression of being nauseous. The jaw isn't breaking, you have the impression it's breaking. The brain sends every alarm signal, all at once, and not one corresponds to a physical reality. The body is fine. The brain says it isn't. And you're trapped between the two, functioning normally in a world the brain perceives as a carousel at three hundred kilometres an hour, for days.

The unspeakable

The hardest part isn't the sensations themselves. It's not being able to say them.

I talk about it with my parents. But it's very difficult. First because it serves no purpose. It serves strictly no purpose except to stress them out, and I don't want to inflict that on them. They can't do anything. They can't go down into my brain and unplug the sensations. They can only listen, worry and feel helpless.

My parents are very worried. And I'm caught in a paradox I don't know how to resolve: if I say nothing, they'll worry because I'm saying nothing. If I tell them everything in detail, they'll worry because it's worrying. There's no good option. There's no amount of information that reassures, because reality isn't reassuring. When I'm in post-adjustment, Dad stays nearby. In the next room. He says nothing, he does nothing in particular, he's just there, available, just in case. Like Mum in the programming room: present and helpless. It's their way of holding on. Mum, she copes as best she can. Like all of us.

And then there's the problem of language. Not the tongue that cramps, the other one, the one used for speaking. How do you describe something that has no name? What does it mean, "feeling like you're falling forward without falling"? What does it mean, "seeing blurry but everything is sharp"? What does it mean, "feeling like the jaw is folding upward and downward at the same time"? These are paradoxes, contradictions in terms, sentences that shouldn't exist, and yet they're the only ones that come close to the truth. You end up piling metaphors, the aquarium, the plane, the carousel, hoping that the accumulation will convey what no single image taken alone can transmit.

And in the end, you see in the other person's eyes that they understand it's hard, but they don't understand what it is. And it's nobody's fault. It's just that some things can't be transmitted. They're lived, and that's all.

Maybe that's why I write these posts. Not so that people understand, but so that the thing is said somewhere, in words that belong only to me, even if those words are paradoxes and "as ifs" stacked on top of each other. At least it's said. At least it exists outside my head.

The panic

And then there's the fear. The one that won't say its name, that prowls behind every sensation, that waits for the moment when your defences are at their lowest to come out.

The fear that it won't pass.

At every adjustment, it's the same thing. The sensations arrive, and somewhere in a corner of my head, a voice asks: "What if this time, it stayed?" What if the carousel never stopped? What if the aquarium became permanent? What if the jaw was like this forever?

It's not the same panic as the three a.m. wake-ups, the one that says "I've got electrodes in my head." It's more insidious. It's the moment when I no longer recognise my own brain, when I no longer recognise my own body, when everything is so far off from normal that the mind disconnects. Others would panic for less. And when the sensations become too strong, when the fatigue is too deep, when concentration drops and everything comes back all at once, reason is no longer enough. I let myself be carried away, and it's the panic attack. The racing heart, the visceral certainty that something is wrong, the whole body on alert.

There's no technique. There's no magic breathing, no mantra, no method. There's just waiting. Waiting for the brain to let go, either from fatigue, or because some external stimulation has come to distract it. That's all. The brain eventually lets go, as it lets go at the end of the Haddock night, not because it's resolved, but because it no longer has the energy to panic.

There's a moment, in the days after, when you think "that's it, it's starting to pass." A signal. But impossible to know which one. Impossible to know whether the slight improvement you think you feel is real or whether it's just fatigue dulling perception. Which makes the whole thing even harder to negotiate: even hope is uncertain.

The button

Did I do the right thing having this operation? Are they worth it, the days after, the puppet, the jaw, the carousel, the Haddock nights, the aquarium and all the rest? Am I finally going to press the off button on my stimulator because enough is enough?

The doubt is permanent. It doesn't come only in the bad moments. It's there all the time, as background noise, like the sensations. But when you've spent the day with your head in a washing machine, when you've had enough, when it won't stop, you see everything in black. And the doubt becomes a voice that screams.

The evening is the worst. When I'm falling asleep, when my head is burning, hurting, going parasailing, bungee jumping, screaming in every direction. That's when the question arrives, naked, unfiltered: why did I do this?

I nearly switched off. Seriously. More than once. I never pressed the button, never, because I'm as afraid of that button as I am of the adjustments. Switching off probably means the symptoms coming back, and the risk of having to start everything over from scratch. Everything. From the first adjustment. Months of work erased by a single gesture. But the idea nags at me. It nags at me often.

What held me back, in the worst moments, is absurd to say, but it's true: it was an artificial intelligence. Claude or ChatGPT, at three in the morning, when everyone is asleep and no one is available to talk you out of it. I ask them: "Give me a reason not to switch off." And they give one. And I don't do it. That's the world we live in: the guy with electrodes in his brain asking a machine to convince him to keep the other machine switched on. It's absurd, and it works.

The fact that the button exists, that I could technically stop everything, is reassuring. It's a safety net. It's not a prison, it's a choice, and as long as it's a choice, it's bearable.

And behind the "did I do the right thing," there's the other question. The one from before. The one from always. Why me? Why this?

That's the worst. Because that one doesn't date from the adjustment. It doesn't date from the operation. It's been there from the start, since the diagnosis, since childhood, since the first tremor. Why me the disease. Why me the operation. Why me the electrodes. Why me the carousel. There's no answer. There never has been. It's not anger, it's not sadness, it's not a void. It's a scream. A mute, permanent scream that doesn't come out, that can't come out, because there's nobody to scream it at and nothing to do with it.

And when you look for an answer, you look around. You look at people who have it worse: cancers, orphans, wars, lives broken in ways I can't even imagine. And the only answer you hear is: "Shut up, it could be worse." And it's true. And it's no consolation at all.

Is it worth it? One day yes, one day no. It changes with the sensations, with the fatigue, with the pain. Last night, the answer was: stop everything. I understand people who want to end it all. Suffering without purpose is horrific. In my case, I know that ultimately, one day, in a few months at most, it'll get better. But when, how, why... impossible to know. Nobody knows. We don't even know if these adjustments will be the right ones.

Tonight, it's okay. Tonight, the answer is yes.

And there's always the yes. Because Rose Marie. Even when things are bad, I think of her smile, I clench my teeth, and off I go again. On a good day, I don't care about the rest: I'd do it all again for her smile.

How long

How long will it last? The honest answer: I don't know. Experience from previous adjustments says maybe eight days. Maybe more. Maybe less. That's the mantra of this life: maybe.

Tomorrow is Monday. I'll send an email to the centre to report the jaw cramps, because it's new and what's new deserves to be said. The next appointment is in May. Until then, you have to hold on.

The world isn't going to stop turning. The classes I teach on Monday are still there. The bills are still there. Life goes on and it expects me to go on with it. So I go on. As best I can. In silence, at work, because I don't like being pitied. In silence, with most people, because they don't ask.

And then there are the comments. The ones from people who know nothing but talk anyway. "You need to do more." "It's in your head." "Oh come on, it's not that hard." "Drink water." "Eat an apple." If you know nothing, say nothing. That's all I ask. Silence is better than well-meaning bullshit. I don't want your armchair solutions. I want to be left alone, or to be asked how I'm doing and for someone to listen to the answer.

I have a lot of "friends." The quotation marks matter. A lot of people, a lot of faces, a lot of connections, but few, very few, who send a small message when it counts. It doesn't change, it's never changed, it'll never change. I was used to being alone, I'm used to being alone, and I'll be used to being alone. That's how it is. It's not bitterness, it's an observation, and the observation has been the same since secondary school, since the moves, since the disability, since the art of mistrusting people that you learn when you're different. Just life.

Wednesday evening, the evening of the return from Paris, there was the small message from A. B. at nine thirty-three. It's nothing, a message. It's everything, a message. It's someone thinking of you at the precise moment you need it, and who doesn't even know it. Thank you, A. B.

The only real difference, now, is Rose Marie. She's the one who makes the carousel spin a little slower.

Holding on is the phrase that comes back most often in this story. Holding on the day of the adjustment, holding on the next day, holding on the days after. Holding on without knowing how long you have to hold on. Holding on by telling yourself that maybe, maybe, we're almost at the end of the ideal adjustments, that this full contact 1 might be the right one, that the brain will eventually adapt and all of this will settle down.

Or maybe not. Impossible to know.

So you hold on.

I take a good dose of ibuprofen. It's better. It'll get better. I just want to know if I'm still climbing toward the summit, or if I'm already on the way down. That's the only thing I'm asking: to know where I am on the curve. But nobody can tell me, and the body gives no clue, and the brain lies.

It'll get better.

BEEP BEEP BEEP BEEP BEEP BEEP. There we go, it's done charging. And it's just as well, I've finished writing.