Mind Games

Quarantine Helped Me Confront My Fear of Hair Loss

Now, I see my former trauma as an opportunity for growth

Photo courtesy of the author.

FFor five years I’ve kept the bones of an essay about having alopecia on my desktop. That essay begins by telling the reader about the first time someone pointed out a bald spot on my head. It was Josh Pfolhs — the most popular boy in the fifth grade — loudly, during a spelling test. Then there are a few pages about my childhood and a few more pages about high school and college and a sort of log of each major flare-up.

Then I stop writing or editing it. Sometimes for a year or longer.

Because I have never been able to figure out what, exactly, I want to say about alopecia.

Alopecia occurs when the immune system attacks hair follicles. The body fails to recognize its own cells, its own hair. It is commonly believed that alopecia is brought on by stress, though scientists still aren’t certain. The only thing they are confident about asserting is that alopecia, of any kind, is incurable. That doesn’t mean it doesn’t come and go for some people, including me, but there is no guarantee of any final going.

I have some combination of alopecia areata — round bald patches on the scalp and face — and alopecia universalis — complete loss of hair on the scalp and body.

There are less than a dozen hairs on my arms, legs, and armpits combined. Previous boyfriends and lovers have tried to count the hairs sometimes — four on my left leg, three on my right leg (all of them on my kneecap), four in each of my armpits.

Sometimes, when new hairs came in, we’d celebrate, naked and laughing.

New or less attentive lovers often wonder out loud how I’m so soft and eventually I point out that I have no hair on most of my body. A search ensues — my arms are rotated, the duvet is pulled back and there is some crawling down the mattress to have a look, the back of the hand used to give my calves a once-over. The conclusion is always the same: I am hairless and soft and telling the truth.

The texture of an alopecia spot is different than a spot of bare or bald skin. It’s smoother, almost wax-like. There are no visible follicles, there is no stubble, it doesn’t get oily like the rest of your hair. It can become almost hypnotizing to touch alopecia spots — like rubbing sea glass.

I’ve tried steroid rinses and steroid injections and seen four dermatologists now in attempts to treat it. The injections send me into week-long migraines and the rinses make my hair so brittle it cracks off. The dermatologists have no other recommendations. Occasionally, someone will tell me they’ve heard rosemary works, but it doesn’t seem to for me.

For most of the last five years, I’ve done nothing to treat it. I usually have at least one spot on my head, but it’s curtained by thick layers of hair still holding on fine. I am not particularly self-conscious about it anymore unless parts of my eyebrows fall out, as they have recently.

I don’t like when it’s obvious that I have alopecia.

But, three days ago, I shaved my head anyway.

Like most of us, I’ve been in isolation. I’ve left the house for essentials and to hike or take walks around my neighborhood, but mostly I’ve been alone in my one-bedroom apartment in Riverside, California, since Wednesday, March 11.

I am, by profession, a writer. And I want to be writing. I would love to be writing. But, like many others, I feel a paralysis when I sit to do my work.

Which is why it’s so strange that the only thing I feel capable of writing about right now is alopecia; the one topic I have fruitlessly tried to nail down in prose or personal essay for years.

Under “normal” circumstances, I never would have shaved my head. Because shaving my head has made it impossible to not look at the bold spots. There the holes are. There is where my hair is missing. Here is how my body has fought against itself. Here is how I have grown worry stones out of worry.

Usually, when I write, I know exactly why I am writing.

Usually, when I write, we are not in the middle of a global pandemic.

If things were different — if my campus was not closed until summer, if I had friends to see and places to go, if I was interviewing for the job(s) I’m going to need come June — I would have never shaved my head right now because it is covered in circular bald patches from stress.

But things are as they are (grotesque, unfathomable, terrifying) so I took scissors and then a buzzer to my head and filled a plastic bag with a year of hair growth.

When I was finished, I sat on my bathroom sink counter and rubbed my thumb on all of the very obvious bald spots. Then I tied up the bag of hair and unceremoniously slung it over a wall in my apartment complex, aiming for a dumpster. Well, that’s done, I thought. A to-do list item, even.

Shave head, bare scalp, expose deepest insecurities during a global pandemic. Check, check, check.

When hair lost to alopecia starts to grow back in, it is at first rough stubble. Then it is soft and thin, like wisps of hair near temples.

It is wonderful to touch.

If there’s someone I trust, I’ll have them look and count the new hairs for me. Four or five in the middle mean the empty space will be full again in a month or two and I can trust this spot is done growing. I can stop checking every day.

Right now I want to watch the loss and regrowth.

When hair lost to alopecia starts to grow back in, it feels like a self-made miracle.

My body grows itself back.

In the other essay, the one that sits on my desktop collecting metaphorical dust, I write about trauma and loss. About the incidents that have made the alopecia worse and caused my body to go into a stress response. The old essay has always focused on what happened to create the loss and, frankly, I don’t have the capacity to do that now. To write or think or look that way.

Right now I want to watch the loss and regrowth. I want to wake up and be able to run my hands over the topography of my scalp. I want to lay in the sun and feel my scalp drip.

This has helped me breathe at a time where it feels difficult to breathe.

Now that we’re in isolation I’ve been drinking my morning coffee with two mourning doves who have made their home on the apartment building across from mine. Yesterday, a black-chinned hummingbird flew into a bit of potted lavender less than three feet from my head. I could hear her humming and see her tiny belly buzz and I wondered how many times I’ve missed something like that before.

I wanted my scalp to breathe for once. To heal and grow while there is some allotted time to heal and grow in our private spaces.

I am slowed down to my routines and habits and thoughts. We all are.

There is nowhere to rush to, there is no one near me to impress. There is no one close enough to see what hair on my head and face is missing and, when I remember that, I try to also remember that it doesn’t matter if they were close enough.

The other essay is also called “The Complete Loss.” I vaguely remember naming it after I had googled “alopecia” and saw those three words in the medical definition. I remember thinking “Can you ever lose something completely?” and feeling like my body was some kind of answer.

I still couldn’t write about it.

I am, in all honesty, sorry to be writing this and not something more… important.

But I am also glad to be writing anything, even if it feels unfinished. I am tired of sitting on and with this. I want it to breathe in the world, even if it feels incomplete.

That’s what I meant by shaving my head, too. I wanted my scalp to breathe for once. To heal and grow while there is some allotted time to heal and grow in our private spaces.

Sinéad Gleeson wrote a beautiful piece for LitHub recently about fragmented narratives and it included this line:

Sometimes the world steers you towards the broken apart, the work that refuses to be glued together, that basks in its un-ness.

There is an un-ness to alopecia.

There is also an un-ness to writing and life and everything right now. I don’t know that it is possible to embrace it, even when we are steered directly to it, but I am going to close my computer and let this be in the world now.

writer & former librarian • A LIGHT forthcoming from Chicago Review Press 2022 • amandaoliver.comtinyletter.com/decorouslines