Field Note 04
Recovery
The hospital is done with you. There’s no plan, no protocol, and no one coming. This is the long, unglamorous rebuild — and it’s where almost all of my progress actually came from.
One patient’s experience — not medical advice. When in doubt, get seen.
Starting from zero
I had a home gym and I used it. Before this, I was lifting fifty to a hundred pounds without thinking about it and walking five to eight miles for fun.
When I went back, I was lifting five pounds. Five. And I had to hold the handrails on the treadmill, because my balance was gone and I’d have gone straight off the back without them. I couldn’t make it around the block.
“Five pounds, and I had to be honest with myself that five pounds was the number.”
That’s the part I’d flag for anyone starting this. The temptation is to train like the person you were three months ago, fail, and conclude you’re broken. You’re not broken. You’re starting over, and starting over has a starting number. Mine was five pounds and one lap of a hallway.
A year later I’m walking around three miles. Not the five to eight I used to do. Three. And three is a triumph.
The one idea that carried me
Energy comes in a bucket. Spend it on purpose.
If you take one thing from this entire website that isn’t about the medication, take this. I still live by it, twelve months on.
Every morning you wake up with a bucket. It’s got a certain amount in it, and it’s a lot smaller than it used to be. Everything you do draws from it. Not just the obvious things — every single thing.
A phone call
Costs more than you’d believe. Talking is physical work when half your face won’t cooperate and your ear is ringing.
A walk round the block
Costs double what it should, because your balance system is doing overtime just to keep you upright.
An hour of yard work
Can empty the entire bucket and borrow from tomorrow’s. I learned that one the hard way, repeatedly.
Once you see it that way, the question every morning stops being “what should I get done today?” and becomes “what is worth the bucket?”
That’s not defeatism. It’s the opposite. It’s how I stopped emptying myself on things that didn’t matter and then having nothing left for the exercises, the walk, or the people I actually wanted to see.
You’ll pay, and you’ll pay tomorrow, not today — which is exactly what makes it so easy to get wrong. One good afternoon can cost you the next two days. That’s not weakness and it isn’t a setback in your recovery. It’s a bill coming due. Rest, and start again.
The team I had to go out and build
After the meds ran out, the medical system had very little left to offer me. So I went and assembled my own team, and I paid for essentially all of it out of pocket.
An acupuncturist from July — including Chinese herbal medicine, which I’ll be honest about: the herbs and teas I rate as mostly fluff. The needling I found more useful than the tea.
Then, from September, the two that mattered most: a chiropractor and a physiotherapist. Between them: cranial-sacral therapy, dry needling, TENS, tuning-fork work, and fascia release. Hands on a body that had stopped working, several times a week, for months.
Do I know precisely which of those things did what? No. Nobody could tell you that. What I can tell you is that I credit the natural and Eastern-medicine side of my team far more than the conventional follow-ups — which, after the first week, had essentially nothing more to offer.
This tier ran me roughly $1,000–2,000 a month, out of pocket, with no insurance coverage. I want to be straight about that rather than pretend recovery is free. But the things that helped me most were the cheap and free ones — the exercises, the breathing, the twenty-dollar piece of foam. If you can’t afford a team, you have not lost. Read The Toolkit, which leads with the version that costs a few hundred dollars, not thousands.
One thing I’d push you toward that I found late
If you have crossed wires — your eye narrowing when you smile, phantom sensations, twitching — that’s synkinesis, and it needs someone who is specifically trained in facial neuromuscular retraining. Not a general physio. Not YouTube. The wrong exercises can actually reinforce the bad wiring, which is a genuinely miserable way to work hard and go backwards. Ask for a facial therapist by name.
What actually moved the needle
The exercises — and they’re free.
The most valuable things I did cost nothing. A mirror. A wall. A latex glove. A towel.
For the smile
The mirror exercise
You set a mirror so it reflects your good side back at you, doubled. What you see is a whole, working, symmetrical smile — your own smile. Your brain gets to watch the movement it’s trying to relearn, instead of watching failure. A decent standing mirror ran me about $36; after that, it’s free every time. Simple, strange, and it helped.
$36 · THEN FREE
For the vertigo
The compass drill
Dots in the four corners of a wall. You track between them with your eyes, ten to fifteen minutes at a time. It’s dull as anything, and it’s how you retrain a vestibular system that has forgotten which way is up.
Free · 10–15 min
For the mouth
Glove-in-mouth massage
A latex glove, a clean hand, and you work the muscle from the inside — massaging and stretching the smile open from within your own cheek. Deeply undignified. Genuinely effective. Gloves cost pennies.
Pennies
For the neck
The long-towel neck release
A rolled towel behind the neck, used to release the fascia and tension that builds up when one whole side of your head has been braced and clenched for months. You’ll be more tense than you realise.
Free
These are the exercises I was given and did, described so you know what to ask about — not a prescription. Facial rehabilitation is a real discipline, and the right exercises depend on how far your nerve has healed — the wrong ones at the wrong stage can do more harm than good. Take this list to a facial therapist and let them tell you which of it applies to you.
The daily practice
None of this is dramatic. That’s rather the point — recovery is won in boring hours, repeated.
A red foam device you lie back onto for ten to twenty minutes, usually in the morning. I started in September. I credit it with ending my vertigo — after three months of the room moving, it stopped. That’s my experience, not a claim about what it does for anyone else. It costs about twenty dollars, which makes it the single highest-leverage thing I bought.
About thirty minutes a day, with red-light glasses on. I used an expensive professional panel — roughly $2,000 — and I want to be clear that you do not need to spend that. A modest panel and a proper pair of glasses does the job. Nice-to-have, not essential.
One of the most powerful things I did, and it’s free. James Nestor’s Breath got me started; box breathing and nose breathing became daily. Free, available to everyone, and I’d rank it above most of what I paid for.
Kinesiology tape across the lips at night, to force nose breathing while asleep. (This is what I did with the tape that was far too harsh for my eye.) Cheap, and it changed how I slept.
A cheap stone tool for working the fascia in the face and neck. Part of the daily wind-down, and one of the few tools I’d put in a minimum kit.
The diet overhaul
Around January and February I finally changed how I ate. Cut the sugar. Cut the soft drinks. Cut the junk. Cut most of the gluten — not religiously, but mostly. Alcohol had already been gone since 2022. The whole aim was anti-inflammatory: stop feeding the fire.
My rule was as simple as it sounds: if a food makes your stomach feel bad, stop eating it. That’s it. That’s the diet.
This is what I did, not a prescription, and there are no numbers or targets here on purpose. If you want to change how you eat while recovering from a serious illness — especially while on medication — talk to a doctor or a dietitian, who can look at your actual situation. And go easy on yourself: I didn’t manage this until month seven.
What I’d personally skip — and why you shouldn’t just take my word for it
Seth’s opinion — not medical guidance
I’d have skipped the Botox, the eyelid magnets, and most of the repeat neurologist visits. My honest view is that they’re band-aids, not fixes. Botox is a neurotoxin your body clears out, so it has to be topped up again and again — you’re renting a result, not building one.
What actually rebuilt me was unglamorous and mine: eating right, moving my body, doing the exercises, exposing myself to the things I was avoiding, and pushing — hard, and daily.
Now here’s the other side, and please read it. Botox for synkinesis is a legitimate, evidence-backed treatment that many facial-palsy specialists use and many patients genuinely benefit from — particularly for crossed wiring and unwanted movement that exercise alone doesn’t resolve. Eyelid weights and similar devices protect corneas and prevent real damage. My scepticism is a personal preference formed inside my own body — it is not a clinical judgement, and reasonable specialists disagree with me. If a facial-nerve specialist recommends one of these for your case, take that far more seriously than you take me.
I’ve left this in because the site is honest or it’s nothing. But I’d rather you argued with me and went to a specialist than agreed with me and skipped one.
How to measure progress when nothing seems to change
This is the psychological trap of month four. You are working every day, and the face in the mirror looks exactly the same as it did last Tuesday. It feels like a plateau. It feels like proof that none of this is working.
Most of it isn’t visible. That’s the thing. Enormous amounts of what’s happening — nerve fibres regrowing at roughly a millimetre a day, sensation creeping back, fatigue lifting by degrees — doesn’t show up on a photograph at all.
So I took weekly photos and videos. Not daily — daily is a recipe for despair. Weekly. And week to week you see nothing. But you put July next to October and it’s a different face.
“The plateau is usually a failure of measurement, not a failure of progress.”
Track things the camera can’t see, too. Could you chew on that side this week? Did you get through a whole meal without biting yourself? Did the walk cost you less of the bucket than it did a month ago? Those are wins. They just don’t photograph.
Where I am today — about 75%
Twelve months on, I’d put myself at roughly three-quarters of the man I was. Here’s the honest ledger, both columns.
What came back
- My eye closes and blinks on its own — since around April.
- Most of the hearing in that ear.
- The vertigo is gone. Completely.
- I’m lifting properly again, and walking around three miles.
- I’m back at work, in the office, in front of people.
- The zingers stopped around the six-month mark.
What’s still here
- My smile isn’t 100%. It may never be.
- The airflow sensation between eyebrow and ear — the crossed wires.
- Tinnitus, every single day, and it isn’t leaving.
- Taste is still around half metallic.
- Fatigue — altitude in particular wipes me out.
- I’m still not really driving. Not yet.
If you’re on day four right now, that list might read as bleak. Read it again. A year ago I couldn’t drink a glass of water or walk to the end of my street. Everything in the left-hand column was, at some point, something I was terrified I’d never get back.
Recovery from this is not a straight line and it is not fast. It’s slow, uneven, unfair, and mostly invisible. But it happens, and it keeps happening — healing continues well past the first year, and I’m not finished.
“Slow is not the same as stuck.”
Seth
Patient · Founder