tricho – hair
till(ein) – to pluck or pull out
mania – madness
When I have trouble writing, the cause is usually a story right behind my eyes that’s clogging up the works.
Not always; sometimes I just don’t have anything to say, but often, I’m gutless and full of fear and…stuck. A writerly constipation, if you will.
I have to tell the story that’s right behind my eyes, but I can’t find my way into that story. The cursor? I wish it would quit blinking at me in that nagging, accusatory way it has. Tell your truth. Expose it to the light. Don’t let it fester. Tell your truth, dammit!
Or maybe I’m projecting.
The story that is right behind my eyes is also ON my eyes, right there on the front of my face. My teenage-angst poetry was full of references to “naked eyes,” which is not an uncommon metaphor for the teenage-angst-poetry writing set.
For me? Not a metaphor.
I was eight years old in October, 1979, when my Aunt Nadine (my dad’s younger sister and only sibling) took her own life. Her sudden death and the week we spent at my grandparents’ house (where I was steeped in my family’s horrified grief) were traumatic.
What followed was worse. My parents, unable to find the support that they desperately needed, began to disassemble a few months after Nadine’s died.
This story? It might have nothing at all to do with that story. I don’t know.
But sometime in the year after Nadine’s death, I started pulling on my eyelashes and eyebrows. Pulling them out.
I don’t know exactly when I started because there was no way for me to know then that this little habit would become an important layer of suck amongst many layers of suck. A Dagwood sandwich of suck.
Why I did this thing was a mystery, and in the beginning no idea that it was anything other than a pleasurable habit. I did learn in a big hurry to keep it a secret; in fourth grade, a friend saw the discarded hairs in a tiny heap on my desk and cried out, “Ewww, gross! Quit doing that!”
Already, I couldn’t quit doing that.
And pleasurable? Yes. I don’t know why, but it doesn’t hurt. It never hurt. The after hurts; the swelling and the rawness and the styes. Windstorms? I’m here to tell you that eyelashes are more than ornaments; they serve a function and without them, even a breezy day can hurt. But the pulling itself? Never painful.
If I pull hair from my head or any other part of my body, there is pain. I imagine it feels the same for me as it does for other people, but for the lashes and brows, no pain.
It’s not because I’m used to it, either, because it never hurt. Not when I was nine or 16 or 25 or 32 or now.
If it had, I don’t guess I would have kept going.
I wish it had hurt.
No one really knows what causes trichotillomania (usually called trich or TTM). Right now, it’s technically classified as an impulse control disorder but among the twelve gazillion and nine proposed changes to the DSM5 is one that would move TTM to a new class: anxiety and obsessive-compulsive spectrum disorders. The most recent research indicates that TTM’s closest relative is Tourette syndrome since both disorders have been linked to a mutation of the gene SLITRK1.
Way back in the beginning, though, I had no idea that I wasn’t the only person in the world who did this strange thing.
Why couldn’t I stop pulling the same way I had stopped biting my fingernails?
I pretended to have trouble with my eyesight so that I could get glasses. I thought glasses would camouflage the missing parts of my face. I told ridiculous stories about my missing lashes (the lashes are always a bigger problem; you can’t draw those on like you can brows). Usually I claimed that I suffered from bizarre allergies, but sometimes I claimed to have a form of alopecia areata that only affects the brows and lashes. (No such form of alopecia exists.)
The bald-faced and weird looking part was bad enough; that I was causing it myself? Exponentially worse. I was desperate for any explanation for my bald face that didn’t involve me, alone, reading books and yanking hair.
I was twenty years old when I finally put a name to the cause of my naked face. My mom came across an article about TTM in a women’s magazine – I don’t remember which one; LHJ or Women’s Day or Redbook – but the day she handed me that article was an important one.
For a dozen years, I thought I was the only one. Age and experience have taught me that the perception of aloneness is almost never true, but I didn’t know that then. I just knew that I was making myself ugly by doing something I didn’t think anyone else had ever done, and I couldn’t stop.
After I read that article, I cried for days. When I was done crying, I went to a psychiatrist for the medicine mentioned in the article, the medicine the author said showed promise in treating TTM.
That was a bust, as were several other medications, supplements, lots of non-medication therapies, and a long list of self-help attempts that range from somewhat reasonable to downright ridiculous.
A therapy that I created in the early 1990s, known as spicy fingers, is not recommended.
The typical course of TTM begins in adolescence, though it can start earlier (as my TTM did) and, if not treated (or, as in my case, not treated successfully) waxes and wanes over the course of a person’s lifetime.
My TTM mostly waxes and rarely wanes. On the other hand, I have not developed other pulling sites.
I was on the hunt for a treatment that worked until Carter was born. At that point I decided that, as much as I hate this thing, as much as I would like to look and feel normal, it is, ultimately, a cosmetic problem.
With all of Carter’s needs, I don’t have time or energy to devote to cosmetic problems.
That right there? It’s a fancy, sneak-up-on-it way of saying I gave up.
I have to draw eyebrows and line my upper lids everyday. If I don’t, I look weird.
Weird enough that people stare.
I’m still ashamed. So terribly, acutely ashamed.
When I first read the research implicating SLITRK1 in TTM, I thought I would feel better. I thought the pain would dissapate and float away like magic.
Nothing ever works that way. When will I learn?
Trouble is, whatever the cause, whether I could control it if I really tried hard or not, whether I’m a person suffering with an illness or a person with a weird habit, making excuses to maintain it, it’s still me, still my hand reaching up from my book toward my face.
In that way, it is very much like Tourette syndrome. I can control the impulse for a little while; a few minutes, an hour, a day, but eventually, the cork will pop.
This thing? I almost never tell anyone about it. Brian knows, of course, and my parents. My kids know because they have watched me draw on my eyebrows hundreds of times. My ex-husband knows because I told him way back when we still liked each other.
I can’t think of anyone else I’ve told.
I doubt that there are many people close to me who haven’t noticed, but they’ve been gracious enough not to mention it.
Honestly? I don’t really understand my reticence to talk about this. I’ve been forthcoming about things that, objectively, are more shameful. Based on the dedication I have for keeping this secret, you’d think I was some kind of criminal and not a person who has a neurological disorder that causes me to pull out my hair.
Secrets are a burden. Ultimately, I believe that secrets will do nothing in the dark but fester and grow.
This is me, putting my money where my mouth is.
If I hit publish on this, it’ll be a miracle. Sitting here at my desk right now, I’m pretty sure this thing will never see the light of day.
I don’t know yet. If there is a picture of my naked eyes anywhere on this page, I found a heaping pile of courage somewhere around here and decided to use it.
If you want to know more about TTM, go to the Trichotillomania Learning Center.