Losing My Hair, Keeping My Face

Everyone warns you about the hair. Nobody warns you about the timeline.

They tell you it'll happen — usually around the second or third round, they say, give or take. What they don't tell you is that it doesn't fall out gracefully, evenly, like something finishing a job. It falls out in a panic. One day you're running your fingers through it in the shower and it's just hair, doing what hair does. Three days later you're doing the exact same motion and your hand comes away holding a small, horrifying nest of what used to be attached to your head, and you stand there under the water doing math you never wanted to learn — how many more showers until there's nothing left to lose.

I shaved it before it could finish the job itself

There's a specific kind of control in that decision that I didn't expect to need so badly. I could have let it fall out on its own timeline, patchy and unpredictable, finding clumps on my pillow every morning like some slow-motion horror movie. Instead I called my spouse into the bathroom on a Tuesday night, handed them the clippers, and said "let's just do it," and he did, and I watched years of hair collect in the sink in about four minutes, and I did not cry.

I want to be honest about that, because I think the story we're supposed to tell is that this moment breaks you, and for me it didn't, not in the way I expected. What broke me was three days earlier, alone, holding that first handful in the shower, ambushed by something I knew was coming and still wasn't ready for. By the time I actually shaved it, I'd already grieved the thing. The shaving was just paperwork.

What the mirror does now

Here's what nobody prepared me for: it's not that I look sick now. It's that I look like a stranger who is also, unmistakably, me. Same eyes. Same nose, same jaw, same face I've had for thirty years. Just no frame around it anymore. Hair does more architectural work than I ever gave it credit for — it softens things, it directs where a stranger's eyes land first, it lets you hide a little without trying to hide.

Without it, my face is just... presented. Fully, with nowhere to look away to. The first few times I caught my reflection unexpectedly — in a dark window, in the microwave door — I had a full half-second where I didn't recognize the person looking back. That's a strange thing to feel about your own face.

Identity is not supposed to live in follicles, and yet

I've always thought of myself as someone who doesn't care much about appearance — I'm a software developer, I have worked from home in leggings for years, I have never once in my adult life spent more than ten minutes on my hair in the morning. So it surprised me how much this specific loss cost. It wasn't vanity, exactly. It was closer to this: my hair was one of the last visibly unchanged things about me. My body has been rearranged by this disease in a hundred ways nobody can see — blood counts, port scars, organs working overtime to process poison that's also, somehow, medicine. The hair was the one change everyone else could see too, which meant it was the moment the outside finally caught up to the inside. The moment I stopped being able to pass.

There's a strange kind of relief in that, actually. I don't have to explain to strangers in the grocery store why I'm tired or pale or moving slower than usual. The story is written on my head now. People just know. Some days that feels like exposure. Other days it feels like not having to perform wellness I don't have anymore, and that's a gift I didn't expect this particular loss to hand me.

What's still there

A week or so after I shaved it, my son told me — completely out of nowhere, apropos of nothing — that he liked my hats. I'd been living in beanies by then, a rotation of them, soft ones for sleeping, warmer ones for actually leaving the house, occasionally a scarf when I wanted to feel a little more put-together. I hadn't asked him what he thought of any of it. He just offered it up, plainly, the way kids offer things, without knowing it would land the way it did. I've been thinking about it ever since.

Because here's what actually didn't change, underneath all of it: I'm still the same person doing the same fighting, whether or not there's hair attached to the doing. The face in the mirror is unfamiliar some mornings. The person behind it isn't. She's just doing this particular hard thing a little more visibly than she used to do anything.

I'll take the wig out for special occasions, maybe. Mostly I think I'll just let people see the whole thing — the scar, the scarf, the bare head catching the light in a way it never used to. It's not the version of myself I would have chosen. It is, undeniably, still me.

💜 Kayla