Field Note 03
The Hard Parts
The paralysis is the part people can see. It isn’t the part that’s hardest to live with. This is everything that came with it that nobody warned me about — the vertigo, the ringing, the metallic mouth, the electric jolts, and the morning you look in the mirror and can’t find yourself.
One patient’s experience — not medical advice. When in doubt, get seen.
Here is the honest inventory — roughly in the order each one wore on me. Not everyone gets all of it, and the timelines are mine, not a promise. But if you’re weeks into this and blindsided by something on this list, I want you to hear one thing first: it is not in your head, you are not imagining it, and you are not the only one it happened to. Nobody handed me this list. I had to learn every item on it the hard way.
Vertigo, and the drunken-sailor months
Day 1 – ~Month 3 · easing by ~Month 6
From the first morning, the room would not hold still. I walked like a drunken sailor — you reach for a wall that isn’t where your eyes say it is. The first few nights I couldn’t even sleep, because lying down and closing my eyes made the spinning worse, not better.
The worst of it ran about three months. It was closer to six months before I stopped feeling dizzy as a baseline. My driver’s license expired in July, I got it back in January, and I’m twelve months in and still not really driving — I just don’t have the confidence yet, and dizzy-plus-exhausted is a bad thing to bring to a car. If you can avoid driving through the worst of this, avoid it.
Early on, my primary doctor prescribed a drug for the vertigo. I took it once, and it made everything dramatically worse — when I shut my eyes the whole world felt like it was ending. I never took it again. That’s my experience with one medication, not advice about yours: if something your doctor gives you makes a symptom worse, tell them and sort it out together. But I wish I’d known that “worse” was even on the table.
What I credit with finally ending the vertigo wasn’t a drug at all — it’s a cheap piece of foam I lie back on, and it lives over in Recovery and The Toolkit.
Tinnitus that never left
Day one — still here every day
The ringing showed up on day one and it has never once gone away. On a good day it’s a one out of ten; on a bad day it’s a ten. And it will ramp up out of nowhere — I’ll be sitting in a quiet room and it suddenly climbs a thousandfold and just screams.
Loud and squealy sounds are the trigger. The strangest specific one: a war movie playing the high ringing sound after a grenade goes off will set mine off badly, so I avoid those. Here’s what I actually do to live with it: Loop earplugs in loud environments, Bose noise-canceling headphones a lot of the time, and loud music can mask it when I need a break. There’s also a trick that helps me in a pinch — pressing the little flap where the ear meets the head inward, which folds it over the canal and dulls both the ring and the general noise.
A quick, honest note: some links below are affiliate links, meaning I may earn a small commission at no cost to you. I only list things I personally used. These are what worked for me — not medical advice, and not a promise they’ll work for you.
What I use — loud rooms
Loop earplugs
For loud environments
They take the edge off loud, echoey spaces without fully sealing you out of the conversation. When a restaurant or a busy room would otherwise spike the ringing, these are what I reach for.
What I use — daily
Bose noise-canceling headphones
For everyday quiet
Noise-canceling doesn’t silence tinnitus — nothing does — but pulling the outside world down makes the ring easier to sit with, and lets me mask it with music when I need to.
Hearing: near-deaf, then mostly back
Worst early — mostly returned
Early on I lost most of the hearing in my left ear — a month in, the audiologist told me I was close to deaf on that side. I hadn’t fully clocked how much was gone, because everything else was screaming louder. Most of it has come back. What’s left is that loud, busy environments are genuinely hard — a crowded room turns into mush. The specialists offered hearing aids, which might help both the loss and the tinnitus; I haven’t gone that route yet, but it’s on the table.
A mouth that tastes like metal
100% metallic early → ~50% now
Taste went completely metallic — for a while I couldn’t taste anything but metal. It’s about half back now, and even then it’s blunt: I get salt, sweet, sour, bitter, and spicy, but not distinct flavors on top of them. Smell dropped out early too and is maybe halfway returned. Dry mouth was total. And because the muscles couldn’t hold my mouth closed, so was the drooling — constant, all day, early on.
Two small, unglamorous things I learned: I drink almost everything through a straw, still, to this day — without one, liquid just flops back out. And drooling ruins clothes fast, so I brush my teeth right at the sink and don’t wander, because if you spit and move, your aim is garbage and you’ll be changing your shirt before the day’s even started.
Eating was a nightmare
Hardest ~first 3 months
This was the one that ground me down daily. I couldn’t chew on the left side, so I had to physically move food across my mouth with a finger to the side that still worked. My jaw seized up like lockjaw, so every single bite was a chore. Soft foods only — I couldn’t face meat for about three months, and when I finally tried chicken I had to cut it into pieces a third of the normal size before I trusted myself to put it in.
The cruel part is the loop it creates: chewing wrong meant biting my tongue and gums, which left them raw and inflamed, which made the next meal hurt more, and on and on. I used Orajel to numb the inside of my mouth just so I could eat at all. And at the three-month mark, a routine dental cleaning meant the hygienist literally holding my mouth open — a real treat.
Cut everything much smaller than feels necessary, chew slow, and keep it on the working side on purpose. It’s tedious and a little sad at first. But it breaks the bite-your-own-gum loop, and that loop is most of the misery.
Zingers, twitches, and the airflow
Zingers ~first 6 months · rest ongoing
The weirdest one: zingers. Electric-shock jolts that fire up and down the face, out of nowhere. I had them for roughly the first six months and then they stopped. There’s also random twitching that’s still around, worse when I’m tired — I eventually noticed my eye twitch tracks with low B12, which is worth mentioning to your doctor if yours does the same.
And the one I still live with every day: when I raise my eyebrow, I feel a strange rush of airflow between my eyebrow and my ear. That’s the nerve rewiring itself as it heals — fibers growing back to the wrong spots, called synkinesis — and it’s a normal part of the process, if a deeply odd one. The dead, tight, no-signal feeling in that side of my face is also why I’ll massage the inside of my cheek to loosen it up.
Brain fog and the exhaustion
Heaviest ~first 3 months
The fog was heavy for the first three months and then lifted by slow degrees. It’s mostly gone now, with the odd day it creeps back. Early on I couldn’t even look at a screen — my phone or iPad just made me more disoriented and irritable — and reading gave me a blurry, astigmatism-like strain (my dry left eye wasn’t pulling its weight), so I switched to audiobooks to keep my mind working.
The bigger lesson underneath all of it: everything costs energy now, far more than it used to — a phone call, a short walk, getting dressed. I learned to think of that energy as a bucket you spend deliberately, which is the single idea that carried me and which I lay out fully in Recovery.
The mirror, and “who am I”
Day one — the long one
The first real look in the mirror was three thoughts in about two seconds: What is that. Who am I. Why me. For months after, I hid. I avoided people in public, I stopped taking photos, and I would not get on a video call — I was flat-out afraid of my team seeing me. Honestly it was often more nerve-wracking for other people than for me; nobody said much, but I could feel them wondering.
What turned it, slowly, was doing the opposite. Now I take a photo every single day, I look in the mirror on purpose, I get on the calls. My face is nowhere near perfect and maybe never fully will be — but hiding from it never once helped, and looking at it every day is partly how I measure that it’s changing.
My first three months had a lot of crying in them and not much happiness, and I mostly kept it to myself — which I’m not sure was the right call. Depression and anxiety after a sudden change to your face are recognized parts of this condition, not a character flaw — clinicians list them right alongside the physical symptoms. If that’s where you are, please say it out loud to someone — a doctor, a therapist, or a person you trust. You do not have to carry the mental side of this alone any more than the physical side.
“But you look so good.”
This is the phrase I hate most, and I want a whole section for it, because it’s the one nobody understands until they’ve lived it. People mean it kindly — it’s offered as reassurance, as a compliment. But “you look so good,” or “I don’t see any issue,” lands as the exact opposite of comfort. It tells you that the thing you are fighting every single hour — a face that won’t do what you ask it to — isn’t real, or isn’t visible, or doesn’t count.
Here’s what it does to you. After this happens, you start noticing every face around you: how people’s mouths move when they talk, the way a forehead wrinkles, a hundred tiny movements you never once thought about and now don’t have. Those are the things you’d give anything to get back. So when someone says “I don’t see anything wrong,” you don’t feel reassured — you notice everything you’ve lost even harder.
I’m not asking anyone to be grim about it. I use dark humor about my own face all the time — I’ll call it my cripple face with total confidence, because it’s mine to joke about. But if you love someone going through this, know that “you look so good” is not the gift it feels like. The good version of the same instinct is on the next section down.
For the people looking after them
If you’re reading this for someone you love
My circle was small — my mom and dad, my grandparents, an uncle and a cousin, and my brother, who quietly took over our business so I didn’t have to think about it. Not one of them had any more idea what to do than I did. So here is what actually helped, and what didn’t, from the inside.
The single most useful thing anyone did was not advice and it was not encouragement. It was being present and filling the gaps — just doing the things the person used to do, before they have to ask.
Be present, and fill the gaps
- Cook the meals. Eating is already an ordeal for them; take the planning and the making off their plate entirely.
- Drive them. They may lose their license or their nerve for a while. Getting places should not also be a battle.
- Do the shopping and the errands — especially the one thing they always used to handle, because right now their brain and their body are in too much disarray to hold it.
- Keep everyone else updated for them. A group chat you run means they don’t have to retell the story, or send the same photo, ten times over.
- Protect their energy. A conversation costs them real, physical energy. Don’t take short replies personally — showing up matters more than talking.
Those group-chat updates felt, to me, like sending the same tired photo over and over. But to my family they meant everything — so if you’re the one keeping people informed, know that it counts, even when the person in the photo doesn’t think it does. And lead with patience over advice, every time.
What to say, and what to skip
Say this
- “I feel for you.”
- “If you want to talk, I’m here — and it’s completely okay if you don’t.”
- “Can I cook / drive / grab groceries this week?”
- Nothing at all — just showing up and doing the thing.
Please skip
- “But you look so good.”
- “I don’t see any issue.”
- “At least it’s not something worse.”
- Anything that quietly asks them to reassure you.
Life is going to be hard for them for a long time — longer than a broken bone, longer than a bad flu, longer than feels fair. You can’t fix that. But you can carry the ordinary weight so they only have to carry the illness. That’s the whole job, and it matters more than anything you could say.
Seth
Patient · Founder