The Field Journal
Four notes from the inside.
Everything I learned when half my face stopped working — written down while it was still happening, then cleaned up for the person it’s happening to now. No textbook. No false cheer. Just what it was actually like, and what actually helped.
One patient’s experience — not medical advice. When in doubt, get seen.
How to use this
You don’t have to read it all today.
Brain fog and exhaustion are real symptoms of this thing, and four long notes is a lot to hand someone on day three. So take what you need and leave the rest. It’ll still be here next month, which is probably when you’ll want it.
The notes
Where it hurts, and what I did.
Each one covers a stretch of the road. Together they’re the guide I couldn’t find at 2 a.m. on the worst morning of my life.
The First Week
Waking up to a face that won’t move, the misdiagnosis that nearly cost me, and the two drugs that are the only thing on a clock.
Inside this note
- The morning the water flopped out of my face
- Bell’s Palsy or Ramsay Hunt — and why it gets missed
- The 72-hour window, and the numbers behind it
- The “wait, only seven days?” panic nobody warned me about
- What the antivirals and steroids actually felt like
Eye Care
The most useful thing on this website. Your eye can’t blink, it can’t close, and it can be damaged fast — here’s the whole playbook, by name.
Inside this note
- The white-eyeball thing, and why it’s normal
- The drops that worked — and the two that didn’t
- Taping and patching at night without wrecking your skin
- Moisture chambers, and why I ended up in a pirate patch
- When to stop guessing and see an eye doctor
The Hard Parts
Nobody tells you about the vertigo, the ringing, the metallic mouth, or what it’s like to look in a mirror and not find yourself.
Inside this note
- The drunken-sailor months, and the drug that made it worse
- Tinnitus that arrived on day one and never left
- Eating when you can’t chew — and moving food with a finger
- Electric zingers, twitching, and the airflow feeling
- Why “but you look so good” is the worst thing you can say
- A section for the people looking after you
Recovery
The long, unglamorous rebuild. Lifting five pounds where you used to do fifty, and learning to spend your energy on purpose.
Inside this note
- Energy in buckets — the idea that carried me
- The team I had to go out and build myself
- The free exercises that actually moved the needle
- Red light, breathing, and the diet overhaul
- Measuring progress when nothing shows on camera
Find yourself on the map
Where are you right now?
The right note depends entirely on what day you’re on. Find your row.
Stop reading and get seen. The meds are on a clock and only a doctor can start them. Come back here afterward.
Start Here Day 1 – onwardProtect the eye that won’t close. This one is urgent from day one and stays urgent for months. Don’t wait on it.
Eye Care Week 1 – 2The worst of it. If the drugs haven’t “fixed” it and you’re frightened, this is the note that tells you what’s normal.
The First Week Month 1 – 3The symptoms nobody warned you about. Vertigo, tinnitus, taste, brain fog, the mirror. You are not imagining any of it.
The Hard Parts Month 3 +The rebuild. The hospital is done with you. This is where the real work starts, and where most of my progress came from.
RecoveryIf you’re starting from zero
Read them in this order.
Not because it’s tidy — because it’s the order the condition hands them to you. What’s on a clock comes first. What takes a year comes last.
If your eye won’t close right now, skip ahead and read Eye Care first. A dried-out cornea is the one piece of damage here that’s both fast and permanent — and it’s also the easiest to prevent.
For the people looking after them
Reading this for someone you love?
Then this part is for you. My family had no idea what to do either — and the thing that helped most wasn’t advice or encouragement. It was people quietly filling the gaps: cooking, driving, shopping, doing the thing I’d always done, so I didn’t have to think about it on top of everything else.
There’s a section written directly to you, including the well-meant sentence that lands worst of all.
Read the family sectionKeep this close
Get the first-week guide.
The short version of everything above — what to do, what to ask, and what to expect — so you can keep it on your phone and stop searching at 2 a.m. It’s free.
No spam. Personal experience, not medical advice. Your email stays private, and you can leave any time.