A Knockout

I have alopecia, which, as very few people know, is basically an allergy to my own hair. (For more info, see www.naaf.org) I've had this since I was two, my hair falling out in big round patches and then growing back, a cycle repeated over and over, again and again. Through grade school, through high school, through college (although for most of my teenage years I was able to hide it with vigilance that bordered on paranoia and hair styles that covered the bald spots). I don't think I dealt with the disease well, instead opting for my family's method of dealing with unpleasantries - ignoring it and anyone who asked me about it. So that was tough, having alopecia in grade school, right? Lousy, actually. But every time the disease flared up, a little less hair would fall out, and I figured that by the time I was 25 it wouldn't fall out anymore.

And then when I was 24, it all fell out. Everything - eyelashes, eyebrows, leg hair - everything except under my arms. Again, tough - I was in my mid 20s, single, and quite suddenly, bald. I knew I never wanted to have to tell someone that I didn't have hair, having already had the exquisite experience of having friends and lovers disappear on me when I did so in the past, so I didn't get a wig. I had my eyebrows tattooed on (ye-fricking-owch) for simplicity, and because I am rather low maintenance and not known for great attention to detail and so feared having my eyebrows careening across my face at odd angles if I left the coloring in all to myself, and because I couldn't get used to my eyes without brows above them. But that's all I did. And I did that, for 10 years. No hair. I got married and divorced with no hair, I got jobs and quit jobs, I made friends and lost friends, but none of that had anything to do with my hair because I never hid the fact that I have none.

Of course this wasn't without its own challenges - it's difficult to be 25 and have a car full of beautiful people slow down next to me on the highway and laugh at me. It's difficult to know what to say when a stranger asks me in the restroom if I have any pubic hair. It's difficult to know how to respond to the man at my cousin's wedding who told me that while I'm pretty enough without hair I'd be a knockout with it. I don't know,even after 32 years of dealing with this disease, how to even believe that people are actually saying the things they are saying to me, let alone know how to respond. So I punt: If I happened to be eating in the car when the highway drive-bys happened (and really, they happened more times than I can count), I'd open my mouth as wide as I could and give the gawkers an eyeful of masticated French fry. I told the woman in the restroom that while some people lose their pubic hair, I myself had not, which was true at the time. And at the wedding I just finished dishing up my scalloped potatoes and went back to my seat, wondering what this man would have said to me if I had lost my arm - would I still be pretty enough without my limb, I wondered, or would he have had the sense to keep his musing to himself. I deal with these situations as they happen, and with whatever energy I have at my disposal that day.

I assume that since I make no secret of my hair loss that people feel entitled to talk to me about it - if it's not hidden, it must be open for discussion, right? And mostly I don't mind, I don't mind the little kids who horrify their parents by asking me why I don't have hair, and I don't mind the cancer survivors who come up to wish me well. (When I was younger people assumed my baldness was a political statement or had something to do with my sexual orientation. Now that I am of the Breast Cancer years, most people assume I'm in treatment. I don't know what to say to the well-wishers either - do I tell them that I in fact don't have a disease in common with them and thereby break the slender band of connection that we all crave? Or do I play along, say I'm feeling fine, that things are "going well," not really lying but not really telling the truth? I never know - I've handled the well wishers both ways, but never to my satisfaction.) I don't mind the little old ladies who press prayer cards into my hand at the grocery store, or the man who offers me a seat at the airport because he thinks I'm sick. I don't take the seat, or keep the prayer cards, but I don't mind it. Mostly.

There are times, though, when I just want to be left alone. Sometimes I just want to go to the grocery store and buy my tub of ice cream and then go home without answering any questions about my health and without having to spend $150 on a wig. It's just hair, for christsake - what's the big deal?

But of course it is a big deal. It is the way we tell at a glance whether a woman is indeed a woman, whether she's young (long hair) or older (short hair or hair put up), whether she's butch or femme, hard of soft, sick or well. We as a species have a lot riding on our hair. I know that. And I have chosen not to wear a wig knowing that, knowing that the price for my honesty is the questions, the stares, the snickering. And then I went to Italy.

My mother turned 65 this year and retired, and my brother, sister and I decided to take her to Rome, a trip she's dreamed of her whole life. My mother is a devout Catholic, and while I myself am not, I am a classical archaeologist by education and so was thrilled at the thought of wandering through the forums and staring into the anguished faces of the Laocoon group (which is a lovely sculpture - you should check it out sometime). And I decided that what I wanted to do in Rome was look - I wanted to move through the crowds and the corridors without attracting attention. I wanted to be the observer and not the observed. So I got a wig, and I wore it in Rome, and I moved through the forum without anyone doing a double take to see if they'd really seen what they thought they'd seen. And it was fun, it was fun to be a Pretty Girl again, it was fun to get the eye and it was refreshing to be anonymous. I can't tell you how delirious I was to just Be, without having to have armor, without having to be on guard, without having to justify my decisions to strangers. I haven't experienced that in ten years, and it was amazing.

Now that I'm back in my real life, I wear the wig sometimes to work. Everyone knows I'm bald, and I think of the wig as a new hat. I can wear outfits that I love but never had a hat to wear with them (think sunburn and winter winds - hats are essential). I don't wear it everyday, I don't wear it around my house, but I like having the option. And then a coworker came up to me today and told me that while my hair is "fine," she misses the hats. She said that the hair style isn't right for my personality (the wig is the exact, and I mean exact, color of my natural hair and cut in the style I last had before it fell out - it looks as natural on me as my nose) and that I should think about something shocking like platinum blonde instead, and that she really misses the "statement" my baldness made. And again I found myself at a loss for words. I don't know how she expected me to respond to her observations, but I ended up feeling rather defeated about the whole thing. I've made a statement every day for the last decade of my life - I'm tired of making statements. I don't want to be the Warrior every day - sometimes I just want to take a vacation from all the work it takes to keep my heart safe as a Bald Woman. Sometimes it seems to me that however I choose to deal with my alopecia, the world wants something different. Sometimes it seems that whatever I do I end up with the wind knocked out of me.

Genesis

New to this. I've been writing my whole life, even before I could write, composing little stories in my head I planned to remember and write down once I learned how. I've keep a journal for 22 years, but haven't been able to sit down to write in it recently. In fact, I haven't been able to sit still, much less write. So since I spend so much time in front of my computer anyway, I thought this might be the way to go. I can't figure anything out without writing it down, and so this last year of limited writing has been rather foggish, and I'm hoping this will help me shrug off the greasy film that's been clouding my vision. So hello.

Some things about me:
1. Not a very strong speller. Am deeply in love with spell check.
2. Middle child. You may sense the resulting bitterness and despair in my writing.
3. Raised Catholic. Again with the bitterness and despair I mentioned earlier.
4. Living in a certain midwestern state where evolution is a nice little theory in principle, having grown up in another, mitten-shaped midwestern state with a large and lovely campground called the Upper Peninsula.
5. Didn't know about chiggers until I moved to my current state - not a real big fan of the chigger. Pretty sure chiggers are the root of all midwestern narrow-mindedness, as it's hard to think clearly when something's burrowing it's maddeningly itchy self into your private folds.

That'll do for now. Don't want to show all my cards at once, you know.