Chapter 3 - Twenty-Nine Years of Dye
Here is what my husband told me, in that hospital room, over the following forty minutes, with his mother standing just inside the door, not sitting down, not invited to.
He has Waardenburg syndrome, type 1.
I had never once heard of it before that day. Most people haven't — it affects roughly one in forty thousand people. It's genetic, and it affects the cells responsible for pigment, which is why it shows up differently in different people: a white forelock, unusually pale or mismatched blue eyes, widely spaced inner eye corners, early graying. And in some cases, hearing loss in one or both ears.
It's autosomal dominant, meaning a parent who carries it has a fifty percent chance of passing it to each child they have.
Rhys has the forelock. He's had it since the day he was born.
He has been dyeing it since he was nineteen years old.
I've been with that man since 2019. I've watched him do his hair a hundred mornings in front of that bathroom mirror. I genuinely thought he was going gray a little early and was quietly vain about covering it up, and I used to tease him about it, and he used to laugh along and let me.
He is also deaf in his left ear. Has been since birth. Moderate to severe.
He never once told me.
He always sits on my left side at restaurants. Always. I thought it was just some small habit of his.
He turns his head slightly whenever I talk to him in the car. I genuinely believed that meant he was listening extra carefully.
Four years of marriage. Six years together. And I did not know my own husband was deaf in one ear.
His mother is named Odette. She's sixty-six. She has the condition too — that's where his came from, and where hers came from before that, passed down like an heirloom nobody asked for.
And she raised two sons who both carry it.
Rhys's older brother, Bram, born in 1986, is profoundly deaf in both ears.
Rhys told me — in that hospital room, on the fourteenth of May, sometime around a quarter to twelve in the afternoon — exactly what his childhood had been like.
Odette started dyeing his hair when he was six years old. Every four weeks, in the kitchen, bent over the sink, a towel wrapped around his small shoulders. He was never allowed to go to school with the white showing.
She told him — often enough that he can still do the exact voice she used — that they were "marked," that people would treat them like something broken, and that the kindest thing she could possibly do was make sure nobody ever had a reason to look twice.
She wouldn't allow Bram to sign in the house at all. He learned anyway, at school, and was punished for using it at home until he was almost fourteen.
When Rhys was seventeen, she sat him down and told him, flatly, that he must never have children of his own.
When he was twenty-two, she told him that if he ever did, she wanted nothing to do with them.
He left in 2016. He was twenty-six. He stopped answering his phone, moved apartments, changed his number, and didn't tell a single person where he'd gone for eight straight months.
And somewhere in the middle of all that, telling people his mother was dead simply became easier than explaining the truth.
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He told his employer she'd died. He told his friends. And in 2020, standing in a flat in Marrowgate next to an old shoebox, he told me.
He has apologized to me for a long list of things since we've been together. He has never once apologized for that particular lie, and I have never once asked him to.
