We The Alopecians

Here’s the thing about alopecians: We’re not all the same.

Some are born without hair. Some lose it so early in life they don’t remember ever having hair—or losing it. Some lose their hair in childhood. Some lose it as teenagers. Some lose it as adults. Some lose it in patches that can be covered up. Some lose it all over their bodies and don’t even have a single nose hair. Some lose it in patches for awhile, then progress to total hair loss. Some respond to current treatments such as steroid injections. Some respond to alternative medicines. Some don’t respond to any treatment at all. Some respond until they don't. Some get their hair back for no known reason. Some get their hair back every so many years. Some get their hair back during pregnancy. Some feel comfortable talking about it. Some never talk about it. Some feel comfortable only in wigs, some in scarves, some in bare scalps, some in tattooed scalps. Some can't imagine the possibility of ever being happy and hairless at the same time. Some blame all their problems in life on alopecia. Some do arrive at true self-acceptance. Some feel sexy and beautiful without hair. Some feel undateable because of their hairlessness. Some have met and married life partners. Some think maybe we shouldn’t be so self-accepting or we’ll never seek a cure. Some worry that if we joke about our bald heads, we’re not taking the disease seriously enough.

Because we have such different experiences, we do not always present a united front. Maybe that’s a good thing. Discussions and debates can challenge our own beliefs and offer alternative perspectives. When done respectfully, they can help us grow.

I cannot—and I do not—speak for all alopecians. I am just one person among the millions worldwide with alopecia. I’m on my own journey—a journey, I must add, that involves frequent evolution in thought and beliefs. Today, sixteen years after losing my hair, I’m not sure I’d welcome my hair back. I don’t even own a hairbrush, much less a curling iron or blow dryer. I rather enjoy being able to get ready quickly without having to bother with hair. I do not miss the hefty price tags of foil colors and perms and styles at fine hair salons. I have found alternative ways to feel feminine: I wear dresses, I get regular mani/pedis, and every once in awhile I wear cute heels that hurt my feet. I’m not sure I still believe a cure is necessary—a contentious viewpoint in some alopecia circles. I hesitate to publicize this viewpoint because the last thing I want to be is disrespectful.

I honestly believe the problem doesn’t lie in the loss of hair but in society’s lack of awareness and acceptance of it. I believe that bald can be beautiful. I believe that my fellow alopecians are some of the most beautiful people I've ever met. I believe there’s a place for hairlessness in the world, just as I believe there's a place for different body shapes, a variety of eye colors, a range of foot sizes. I believe in embracing our individuality and that our differences are what make us beautiful. I believe that the cultural definition of beauty just may shift one day to include hairlessness, just as it has shifted to include a bigger booty and thicker thighs.

But I also remember when I wasn't ready, or willing, or able to believe these things. So I welcome the dialogue. I agree to disagree. I am open to new ideas. And old ones. In the meantime, I place my hope on society rather than research, on humanity as opposed to a cure. And I do my best to be the change I wish to see in the world.

Picnics and Lunches and TV Segments, Oh My

On Monday, my alopecia support group held its annual picnic. It’s the one time of year when the Denver alopecians get together with the families, bald adults with bald children, the patients with Dr. Norris, a prominent researcher in the field. I think this is my fourth picnic with the group, and every year I get something new out of it.

One year, Dr. Norris suggested that alopecians probably should steer clear of immunity boosting products such as Airborne. That’s because alopecia is an autoimmune disease, meaning that our immune system is already working on overdrive fighting our hair. The last thing we need is an artificial immunity boost.

Another year, Dr. Norris said he’d never seen an alopecia patient with skin cancer. Not that he was recommending sunbathing without sunscreen or spending your days in the tanning booth—we all know that’s bad. It was more of an observation—but an interesting one. What does it mean? Who knows.

Research on alopecia continues; that’s what I heard from Dr. Norris this year.

But that’s not what made an impact on me this year. Instead, it was a side conversation that sticks with me.

I was talking to some people about the Bald Girls Do Lunch segment on the Today show in late July. Bald Girls Do Lunch is a nonprofit whose mission is to help women with alopecia cope, gain confidence, and feel a sense of community—primarily by bringing them together at lunches, dinners, and events. Let’s face it, there is no cure. No promising new treatments. Not yet anyway. Bald Girls Do Lunch helps women cope effectively today.

Now, this is a group whose mission aligns with mine.

Anyway, we’re at the picnic and I bring up the segment.

“I loved it!” I say. “Finally, we’re getting some good exposure for alopecia.”

Others chime in. We smile. We high five. We celebrate. We always celebrate positive media impressions for alopecians—especially one of this magnitude. The Today Show. Wow. And what a message! Normally, television coverage focuses on getting the bald girl into some sort of wig. Not that there’s anything wrong with a wig, Lord knows I spent my share of time in one.

“But,” says a woman whose grown daughter has had alopecia for years, whose daughter experienced re-growth through three pregnancies only to lose her hair again, whose daughter isn’t even at the picnic because she lives in another state, “They looked so happy.”

“Yes,” I smile. Happy alopecians. Isn’t that great?

“They didn’t even say they were devastated,” she says.

“No,” I shake my head, still smiling. They sure didn’t say that. Hallelujah.

“They didn’t say that every day of their lives they wake up and they’re devastated,” she says.

Woah.

I suggest that maybe these ladies really are okay with it now. Maybe they used to be devastated but aren’t anymore. Maybe they feel better when they're with other people.

"But they aren't being honest," she says.

I confess that I don’t wake up every day and feel bad about my hair loss. Not now, not 17 years after the bald spot that started my total loss of scalp hair.

She couldn’t see that. She really felt that an opportunity was lost, an opportunity to convey the emotional toll that alopecia takes.

And she’s right.

Later that night, Dr. Norris commented about the emotional toll of alopecia, especially on women. He said he thinks this part of the disease is largely ignored, goes largely untreated.

And he’s right.

When my hair started to fall out, I remember crying myself to sleep every night. I stopped looking in mirrors. I refused to be in pictures. I didn’t talk about it. I closed myself off in ways I can only now see, many years later, many years after finally accepting my fate.

I think alopecia will always be an emotional disease as much as a physical one.

But…devastation isn’t a state any reasonable person wants to maintain. Devastation isn’t a healthy state of being. It just isn’t. At some point, you have to accept a life without hair.

Sure, some people get their hair back. I saw a few such people at the picnic. And they looked great. But that’s not what most of us are facing. We’re facing a life without hair.

And there are worse things in life than losing hair. Really. I can name several, real-life things that happened to people I know just this year.

So, I choose to accept my hair loss—embrace it, even. I choose to examine my life without hair, to share my experiences and observations with other people, to educate as many people as possible, and to do my part in creating a world where women do not have to feel such devastation over losing their hair. At least not over the long-term.

That’s all I can do.

And maybe—just maybe—in my lifetime I will get to see a shift in thinking about bald women.

I'm not sure this particular woman from the picnic will be among those who make that shift. But you never know. If it happened to me, it can happen to anyone.

Bald? So What

Sunday, July 19, was the first National Bald Out Day, organized by Mary Marshall (pictured here) of San Diego.


The idea was to encourage people without hair to come out of the wig closet for one day. The benefits were two-fold. By shedding their wigs, bald people—especially women—would increase awareness about hair loss. But also, for bald women, going out in public without their wig, their crutch, could be empowering.

How did I celebrate National Bald Out Day? Not by baring my bald head. It’s not that I didn’t support the effort. I did. I do. It sounded like a great cause.

Every now and then I consider parading around in my bare head. Okay, parading sounds a bit flamboyant for me. Every now and then I consider skulking around without anything covering my bald head—no scarf, no hat, no wig. I think about it. I even threaten to do it someday. But I don’t actually do it.

Back when P!nk launched her singing career and her rebel image, I thought the epitome of freedom was pink hair. Sporting pink hair was like an “up yours” to conformity. A freshly minted MBA at the time, I was knee deep in conformity. Corporate recruiters insisted they wanted out-of-the-box thinkers, creative problem solvers, innovative business leaders who refused to do things the way they’d always been done. But show up in a suit, please. Don’t wear any gaudy costume jewelry. No nose rings or pink hair, for God’s sake. I was the queen of conformity then, with my Ann Taylor and Jones New York outfits, my one piercing in each ear, and my shoulder-length, auburn hair, styled conservatively. I was Christy with the auburn hair, only my auburn hair wasn’t my own. It was a wig. An expensive, human hair, vacuum seal, custom-fit wig designed to look natural. That wig helped me feel normal. But deep inside I longed to show up at work with pink hair. I couldn’t do it.

Today I could do it. But pink hair is no longer the epitome of freedom to me. Now it’s a bald head. And I can’t do it.

While island hopping around Greece after college, my naïve American eyes noticed something different about the women on the beaches: they were topless. Skinny women, fat women, old women, young women, exotic women, even mustached and bearded women paraded—yes, paraded around the white sand in bikini bottoms and bare torsos. I envied their freedom. I wanted a piece of it, to feel it, if only for just a day. Every morning I told myself, “This is the day I will go topless in Greece.” And every day I put on my bikini top, or my one-piece bathing suit. Nobody—not one person in Santorini, Paros, or Mykonos—cared what I wore on the beach. But I cared.

I said I was worried about tan lines. The topless women in Greece had tanned torsos, the result of being unencumbered by a need for tops on the beach. When I glanced across black sand or blue waters, I couldn’t immediately tell the difference between the men and women. I just saw a sea of bronzed bodies in colorful bikini bottoms. If I went topless, well…that would be different. I’d have a white stripe across my chest. Whereas they blended in, I would stand out.

I said I was worried about blistering my virgin skin. I’d had sunburns before, and I said I just couldn’t risk another bad burn on my white, white skin.

Now I say the same about my scalp. I couldn’t possibly bare my naked scalp, because I’m worried about tan lines. I have tan lines on my forehead from wearing a bandanna. I might blister the virgin skin of my scalp.

The truth is, I’m just not free enough to take this step. It’s still out of reach.

For now.

But I'm hoping that one day I'll be able to parade around town without anything covering my head and say, "Sure, I'm bald. So what?!"

© 2009 Christy Bailey

Letting Go

I hold onto things. It’s my way.

Bank statements, signed yearbooks, partially filled journals, scratched up leather purses, clothes I’m going to fit into again one day, cute shoes I would love to wear if only they didn’t hurt my feet so badly, photos of people I don’t even remember…I still have my tax records from my college years, report cards from elementary school, expired driver’s licenses and passports.

Call it sentimental. Call it research for my book. Call it the hoarding gene. Any which way you dice it, it’s over the top. And it has been weighing me down and holding me back—which is why I decided to make 2009 My Year of Letting Go.

I started the year with a colon cleanse, to let go of the toxins in my body. Bye bye holiday sugar, fat, alcohol, and caffeine.

Next I played with a shredder to safely and securely let go of an entire filebox of unnecessary papers. Good riddance paystubs from old jobs and utility bills from prior residences.

In February and March, I let go of two dozen shopping bags full of used-up and useless material possessions. So long moth-eaten sweaters, faded and bleach-stained t-shirts, blister-causing heels, tapered-legged suits, and many, many miscellaneous never-gonna-be-used-in-my-lifetime household items.

It was working. After dozens of trips to the alley recycling bin and neighborhood Goodwill, my load was lighter, for sure. But I was still feeling burdened by old grudges, wounds, anger, other people’s expectations, and a few societal norms I no longer believed but by which I continued to measure my success.

To let go of these long-held patterns and deeply rooted belief structures, I was going to need the help of a professional. Enter licensed practitioner Joanne Wambeke of Colorado Healing Services.

In our session, Joanne used the Japanese healing art of jin shin jyutsu to find – and treat – my internal energy blocks. Not acupuncture, but accupressure. Not needles, but the gentle pressure of fingertips. I’m sure it worked, because the longer I lay on the massage table in the dark, listening to soothing music, the more relaxed I felt. Farewell, accumulated energy. Hello, natural energy flow and clearer thinking.

The harmonization of energy and pulsation was followed by a secret Letting Go ceremony, involving the release of my inhibiting beliefs into a small body of water. Well, at least the beliefs I could think of in a 15-minute meditation and fit on a small piece of dissolving paper, which was released into a water-filled kitchen sink. The voices of an overbearing boss, judgmental relative, and lying ex faded and slipped out of reach.

I’ve taken my Letting Go goal very seriously – except, it seems, when it comes to my hair. Sure, now I talk openly about my alopecia when once I went to great lengths to hide it. Yes, now I laugh about being called a pirate when once I couldn’t even say the word “wig” because I was so ashamed of my hair loss. Certainly, I’ve come a long way.

Actually, I’ve come so far that it took me awhile to realize I was still holding onto anything related to my hair.

I was researching the official definitions of alopecia and all the types—areata, totalis, universalis—so I could explain the differences here in the blog.

Always, I’ve been an areata, the type of alopecia characterized by patchy hair loss. It started with one small, quarter-sized bald spot. Then the spot multiplied, and multiplied again, like rapidly dividing cells, creating one big bald patch on the left side of my head, another on the right side, another in the back. But still, patchy: large bald patches paired with smaller patches of hair. That is, until this year, my Year of Letting Go.

Here on the blog, and to anyone who'd listen, I’ve been going on about my three remaining hairs, posting pictures of them, joking about them, carefully pulling them out from behind the scarf before I head out each day, all the time ignoring the fact that three hairs no longer qualifies as a patch. Three wiry hairs means I have transitioned from alopecia areata to alopecia totalis, or total loss of scalp hair.

It shouldn’t matter. I mean, I’m okay being a bald girl. I am. I don’t expect to get my hair back. Ever. I’m okay with that. And it’s not like anything has changed from yesterday. I only had three wiry hairs yesterday. I’ve had three wiry hairs all year, which sounds like a long time until you realize I started losing my hair in 1994. I’ve been an areata for 15 years, and now suddenly, for no apparent reason, I’ve become a totalis.

Before I can even accept my new label, I find myself worrying about slippery slopes, and transitioning from totalis to universalis, which is a total loss of body hair. No more eyebrows. No more eyelashes. No more stray hair on my leg. Not that stray hairs on my leg are a big problem. But still…

All of a sudden I’m more acutely aware of a loose lash, the shape of my eyebrow. Is it happening now? Will it happen soon? Will I know it when it happens? Will I see a clump of lashes on my mascara wand one day? Should I stop using mascara? Can you stop the progression? Can you slow it?

And here I am again, holding onto hairs, and beliefs about their significance, and the comfort of old labels.

I feel a knot in my chest. My heart rate rises. This is not good. I must take action immediately.

So today, in My Year of Letting Go, I am publicly letting go. I’m letting go of my need to know, to control, and to label. I'm letting go of my belief that eyebrows and lashes somehow make me more normal. I'm letting go of wanting to be normal. Even better, I'm letting go of my definition of what it means to be normal. Again.

It is what it is. And whatever it is, I’ll be okay.

© 2009 Christy Bailey

What I Know

It’s just hair.
What a ridiculous blog topic.
Get over yourself.
Who cares about hair loss?

And yet.

People do care about hair, a lot more than they’re willing to admit.

How else would you explain the fascination with Britney’s head shaving? What about Colbert shaving his head in support of the troops? Forget about shaving…what about the girl on America’s Next Top Model who cried when they wanted to cut her hair?

How else would you explain the reaction of 52-year old Jessie to her new hairdo on What Not to Wear last Friday?

I’m a What Not to Wear addict. You know the show: stylists transform fashion disasters with age-appropriate, tasteful, professional, modern, flattering clothing. Sure, Stacy and Clinton can be a little mean. But they never insult a person’s body. Instead, they rip up a person’s clothes: grandma’s yellowing slips worn as dresses, leopard skin spandex tights, crochet vests, high-waisted Mom jeans, plaid pajama pants worn to the grocery store, and the occasional odd accessory like butterfly wings or a fuzzy tail. (Seriously, some of these people need their wardrobes ripped up—literally.) I’m a fan.

So you can imagine how excited I was to learn that the seventh season had officially kicked off and that new episodes would be airing on Friday nights again. (I need a life, but that’s another blog post.) What a lineup! Blossom, a roller derby queen, a big-haired Texan…I couldn’t wait to sit on the couch and soak in the style lessons.

Most of the time, the fashion makeover candidate walks away not just with a more polished look, but more confidence. But not Jessie, the glitzy, stuck-in-the-80s divorcee. She missed her old hair: her too blonde, too-sprayed, too “Big-as-Texas” hair. She cried, withdrew, asked her male friends not to come to her reveal party, and couldn’t enjoy the experience. She said she’d never have a date again in her life because her long hair was now short hair. She couldn’t wait to get her old hair back, even after all her friends and family raved over her new look.

Some say she’s ungrateful. Others say she’s got issues. Others agree with her and think Nick messed this one up. You can check out the new do here and decide for yourself.

I happen to like it. Of course, I’m not the best judge. I don’t even have hair. What do I know?

Let me tell you. I know that bald can be beautiful, because I’ve seen it. I know that we are more than our hair, because I’ve lived it. I know that life goes on, and sometimes gets better, after hair loss.

I wouldn’t wish what I’ve been through on anyone, but I wish that more people knew what I know. I wish Jessie knew.

© 2009 Christy Bailey

If I Had a Million Dollars

Baby fuzz. Say the words and hearts start melting. See that soft, fine hair on an infant’s head and your hand automatically reaches out to touch, pat, or pet. Oohs and ahhs and a drawn-out “aw” spontaneously slip from your mouth.

Now imagine that same soft, fine hair on the balding head of a grown woman. On me.

In my world, talks of baby fuzz mean I have a spot of new hair growth. My baby fuzz is soft, but not cute. Certainly not ooh-and-ahh inspiring or aw-worthy. More like patchy. Well, more like one small patch on the left side of my scalp. Or a handful of hairs at my hairline. The hairs are blonde, fine, sparse. They come and they go, to where I don’t know. I don’t see them on the inside of my scarf, the pañuelo of the day. I don’t see them at the bottom of my shower drain or on my pillow. They just disappear.

I know better than to get excited about baby fuzz on my head. But I can’t help but be curious—what if? I find myself studying my head in the mirror. Touching, patting, petting it. Wondering: What if it were to grow back? What would I do?

It’s like playing the lottery. I know the odds are low, but even so, even when I forget to buy a ticket, I still like to think—what if? If I had a million dollars, ten million, a hundred million, what would I do? How would I spend it?

Of course I can’t know for sure until it happens. But I have a rough plan, at least for the lottery winnings.

For the hair, I have no such plan. If it did grow back–and I know people who’ve experienced re-growth–I wouldn’t know what to do.

It’s been so long since I’ve had hair, I no longer remember what to do with it. A couple of weeks ago my cousin asked me to put a new clip in the back of her hair and I froze. Do I grab all the hair with the clip or only a portion of it? Do I use my hands or is the clip grip sufficient?

I look at my niece’s long hair and I don’t remember how to twist it into a French braid.

I don't remember how much prep time to allow for hairstyling. I don't even own a blow-dryer. Or a curling iron. Or a snag-free ponytail holder.

But that’s not the hard part. I would relearn hair care if it came to that.

The hard part would be trusting a brush not to tug the hair right out of my scalp. I don't know if I could highlight my hair or perm or cut it ever again and not worry that it would cause a bout of hair loss. I would be afraid to wash it.

The hard part would be relaxing enough to let someone touch my hair. I don't know if I could allow a man to run his fingers through it or a small child comb it without wanting to check their hands, the ground, my head for loose hairs.

The hard part would be believing my hair would still be attached to my head when I woke up.

The hard part would be figuring out who I was all over again—with hair. After spending so much time learning to embrace myself without it.

I used to ask the Universe every day to give me my hair back. Now I’m not sure I could handle it. Even more important, I’m not sure I’d want it.

Better to have something I'm prepared for, like the million dollars.

© 2009 Christy Bailey

Does Head Shape Matter?

“But you have such a nice, round head.” That’s what people say to me.

It’s a compliment, I guess, but not one I ever expected or hoped to hear. I smile and say thank you but don’t know how to compartmentalize the information. It doesn’t fit into any known categories of physical beauty: skin tone, eye color, thinness, femininity, definition of cheek bones, tightness of skin, softness of features. Having a perfectly round head is meaningless by societal standards, like having a perfectly arched armpit or a lovely knuckle. No scale exists for these features. And without a measure for the object of flattery or praise, the compliment seems meaningless, a mere comment or statement of fact.

It’s true that my head is round and mostly lump-free. But I only know that because I don’t have hair.

And it’s only a compliment because I don’t have hair.

People with hair don’t care what shape their head is. They also don’t know what shape their head is.

“You look so much better bald than I would,” they gush. Because they have peanut heads, bumpy or lumpy or scarred scalps, giant craniums with craters or knots. So they say.

Now they can find out—kind of, anyway.

For a small fee, “Ofer” offers a virtual head shaving. You submit a photo, and you get four versions of you as a baldie. It’s supposed to help you see how much better you’d look bald than patchy or half bald or dramatically thinning, so you can build the confidence you need to just shave it off already. Check it out. Even if you don't want to try it, you may want to look at those who have become imaginary baldies.

You can also see what a variety of celebs would like like if they were bald. See what you think.

Now, I have to say: Some of the celebs look better than others. It could be merely an issue of facial features. Those with the best facial features don’t need to hide under their hair; they are stunning without it. But I can’t help but wonder if Ofer gives his personal favorites better looking scalps than others.

Which brings me back to my original thought: Does head shape matter? Is being bald any easier when you have a nice, round head?

I don't think so. Either you're devastated and you don't care about your head shape, or you're okay with it, and you don't care about your head shape.

I think maybe it's something to say when people don't know what else to say.

The good news is I'm okay with my hair loss now. I embrace it. And though head shape compliments don't make me blush or glow and smile, I still like them. Because I know that the people who say it mean well.

© 2009 Christy Bailey

Take Me the Way I Am

There aren’t a lot of songs about hair loss. So last summer when I heard “Rogaine” in a breathy, singsongy voice on the radio, I went on high alert. I held my breath in anticipation of learning the artist name: Ingrid Michaelson.

Immediately, “The Way I Am” became my new favorite song.

The Way I Am by Ingrid Michaelson

If you were falling, then I would catch you.
You need a light, I’d find a match.
Cause I love the way you say good morning.
And you take me the way I am.
If you are chilly, here take my sweater.
Your head is aching, I’ll make it better.
Cause I love the way you call me baby.
And you take me the way I am.
I’d buy you Rogaine when you start losing all your hair.
Sew on patches to all you tear.
Cause I love you more than I could ever promise.
And you take me the way I am.

At first, I found the lyrics to “The Way I Am” sweet. You take me the way I am? Wow. We all long to find someone who will do just that – accept the good, bad and ugly in us.

The more I listened to the song, however, the more I became bothered by it.

Never mind the implication that baldness is some sort of problem with an easy fix, like a chill, or a headache, or a holey sock. Just use Rogaine, and shazam, problem solved. It’s not always that easy. There are many types of baldness, caused by different things, and treated in different ways. With my type, some people lose quarter-sized patches of hair on their scalp, while others lose all body hair. Some grow their hair back quickly, while others never get their hair back. Some people re-grow their hair with Rogaine, only to lose it again when they stop taking the treatment. I certainly tried it, years ago, before there even was a Rogaine for women. I only had a few bald spots back then, and I was desperate to have my hair back. I also tried steroid shots and an irritant cream that turned my head purple and made me want to scratch my skin off. Sometimes these treatments work on alopecia. None of them worked on me.

Then there’s the idea that balding heads are indeed a problem—something that needs to be fixed. Aren’t bald men considered sexy these days? Think Taye Diggs. Yowza! Couldn't someone facing hair loss embrace a bald head? Why should we assume that everyone automatically wants to treat hair loss?

But what really bugged me was the underlying message of acceptance paired with the “I’d buy you Rogaine” lyrics. Can you “take me the way I am” and still want to make changes? Doesn’t acceptance mean you experience something without attempting to change it?

I had to look up the definition.

From merriam-webster:
ac·cept
transitive verb
1 a: to receive willingly b: to be able or designed to take or hold (something applied or added)
2: to give admittance or approval to
3 a: to endure without protest or reaction b: to regard as proper, normal, or inevitable c: to recognize as true : believe
4 a: to make a favorable response to b: to agree to undertake (a responsibility)
5: to assume an obligation to pay ; also : to take in payment
6: to receive (a legislative report) officially

Hmmm…not exactly what I’d hoped for. The only definition with any reference to change is the third one: to endure without protest or reaction.

Is a balding head something to be endured? Maybe it is.

But maybe it doesn’t have to be. Once upon a time, bald wasn't even acceptable, much less sexy. Balding men scrambled to find just the right toupee and then prayed people wouldn't notice the rug on their head. Balding women didn't exist, at least not in the public eye. People didn't embrace their baldness. They didn't own it.

But that was before Sean Connery went bald and still managed to be sexy.

That was before Michael Jordan and many other basketball players made it cool to be bald.

That was before Melissa Etheridge performed bald at the 2005 Grammy awards.

That was before Robin Roberts ditched her wig on Good Morning America last year. And then walked the runway - bald.

As long as there are confident bald people willing to set an example, there's hope for all of us.

As for Ingrid Michaelson’s song, I still find it catchy and sweet. It’s just not my idea of true acceptance anymore.

What is? How about these:

“I am not my hair
I am not this skin
I am not your ex-pec-tations
no no I am not my hair
I am not this skin
I am a soul that lives within”
– Singer India Arie, “I am not my hair”

“They say time takes its toll on a body
Makes a young girl’s brown hair turn gray
Well honey, I don’t care, I ain’t in love with your hair
And if it all fell out, well, I’d love you anyway.”
– Singer Randy Travis, “Forever and Ever, Amen”

What do you think? Are acceptance and change mutually exclusive?

© 2009 Christy Bailey

It's Just Hair...Or is it?

I used to love Sundays for the extra newspaper stories, coupons, and classified ads, partnered with strong coffee, of course. I still enjoy these things. But I’ve discovered a new reason to love Sundays: That’s when the secrets are posted on PostSecret.

Created by Frank Warren, PostSecret is a group art project that involves people mailing their secrets anonymously on a homemade postcard. The only rules are that they must be true and never shared with anyone before. If you haven't checked out the website, do so. It's amazing to see what people say when they know they won't be discovered.

My biggest secret used to be that my hair was really a wig—an auburn, vacuum-seal, custom, natural hair piece made of fine European hair.

It looked real, and that was the problem. I was determined to make people think it was real. Or at least to make sure they never, ever wondered if it was real or not. Like most people with a big secret, I went to great lengths to cover it up.

Some people want to go where everybody knows their name. Me? I moved to another state where nobody knew my name, or my original hair color, or what my hair used to look like before it fell out. In this new place, people knew me as Christy with the auburn hair. They had never seen me with patchy hair, or with a comb-over hairstyle, or in wool berets. Every now and then, someone in this new place would make a joke about redheads, and it always took me a minute to remember that I was the redhead being referenced. Ah, they don’t know my secret, I’d smile to myself.

For a long time, I didn’t go to the gym because my fancy hair didn’t mix well with sweat. Imagine wearing a flimsy silicone hot pad over your head while you’re on the elliptical machine. That’s what made up the suction cap of my fancy hair piece: bendable silicone. Try it sometime. It’s not fun. Finally, Mom figured out how to sew Velcro strips of synthetic hair into breathable baseball caps: a three-inch strip of short bangs in the front, a longer strip of shoulder-length hair in the back and sides. We were careful to match the color of the synthetic hair strips to the color of my fancy hair piece. The length too. That way people wouldn’t wonder why my hair looked different in the gym than, say, the grocery store. Or in the office. Suddenly, I was able to work out again. I started running. I toned up. And if anyone noticed the difference, they didn’t say anything.

It took even longer for me to get the courage to swim. My suction hair piece was supposed to stay on in the water, but I never trusted it. The suction required a completely bald head, and I still had hair patches back then. I liked my patches – a couple at the bangs area, a couple at my ears – because they made my fake hat hair look more natural. Besides, real people swam laps in a swim cap. But I couldn’t just drive to the pool in a swim cap. I’d look ridiculous. Which meant I’d have to put the swim cap on in the women’s locker room. Finally I figured out a plan: I’d make the switch behind the shower curtain. It wasn’t easy. I was the only person taking a big duffel bag into the shower stall. But where else would I put the fancy hair piece without anyone else seeing it? I would walk into the stall wearing the fancy hair, and walk out in a blue swim cap, the fancy hair carefully tucked away in the duffel bag. After the swim, I reversed the process, removing the swim cap, then replacing the hair piece onto my nearly bald head, always behind the curtain. I would even dab a little water on my wig and wrap my head in a towel before departing the shower stall. One time a friend asked, "How does your hair always dry so quickly?" I smiled. She didn’t know.

Keeping my big secret took a lot out of me. Not just energy, or time, but opportunity, too. To trust. To set an example. To educate. To increase awareness.

It’s like the movie, Milk. Great movie. What did Harvey Milk say? Something like, if they know one of us, they will vote for us. I can't recall it verbatim. But the idea was that people didn't even realize that they knew gay people, because so many gay people were afraid to come out.


Okay, so it's not exactly the same. But so many alopecians hide their baldness. They don't share their secret.


I am finally ready to unleash my secret hair confessions, both from my days with and without hair:

• I cried when I got my first perm because I didn’t like the way my hair turned out. It was too curly. (Wasn't that the idea?)


• I lied when I said the sun naturally turned my orange, yellow, and then a platinum color only seen on strippers. It wasn’t the sun; it was Sun-In. I have no idea why.


• I spent way too much time wishing my hair was something it wasn’t: curlier, blonder, fuller, thicker, shinier.


• I cried myself to sleep every night for months when my hair first started falling out.


• I felt guilty for crying over my hair. It wasn’t like I had lost a limb or anything.


• I felt guilty for wanting a cure for alopecia. It wasn’t fatal.

Is it just hair? We like to think so. But until we can truly open up about the topic, until we can confess how much time and money we spend on our hair, how strongly we react when our hair doesn't turn out the way we want, how negatively a bad hair day can affect our self-esteem, how important the right hair color, length, and style is to our identity and our sexuality...until we can admit all that and more, how are we supposed to have a fair discussion about baldness in women? How will we accept it, perhaps even embrace it?

What do you think?

© 2009 Christy Bailey

What Does My Hair Say About Me? Apparently, That I'm a Pirate

Growing up, my hair said I was a follower. I had a short Twiggy shag and a Farrah Fawcett feathery flip, Madonna's teased hair and a Molly Ringwald poodle perm bob - always well after the trend had caught on.

The pattern stops at The Rachel, the bouncy, long, layered hairstyle introduced and popularized by Jennifer Aniston in the first season of Friends. That was the year I transitioned from late majority follower to trendsetter. I use the term loosely, because I was not setting trends that generated followers: the oddly placed barrette, the female combover, the office beret, the synthetic strip of bangs velcroed to a baseball cap.

Let's be clear: I did not want to separate myself from the crowd. I was dragged away kicking and screaming. For some of us, that's the only way to cross the chasm from one way of thinking to another.

If my hair hadn't fallen out, I probably wouldn't have adopted a style of my own, especially one that sends such mixed messages. Today, I am Pañuelo Girl, the girl who wears scarves. It means different things to different people, and I'm okay with that.

Sean said he thought I was a motorcycle chick.

Jane said she thought I was stylish.

Every now and then a guy - usually an African American - thinks I am a hip hop girl.

Of course, there are those who think I have cancer.

Kids have their own ideas about scarves. One day I was working the volunteer registration booth for a trail cleanup project, when a four-year-old boy approached me, cocked his head to the left, and asked, "Are you a pirate?"

"Why, yes, how did you know?" I laughed.

"Because of that thing on your head!" He was talking about my black scarf, tied do-rag style, with a double knot at the back of my head, long tails hanging down my back. He grinned and turned to the man behind him. "She’s a real pirate, grandpa!"

I had to smile.

People will always apply their own perspective to what they see, but that doesn't change who or what I am.

What does my "hairdo" say about me? It says I'm comfortable with myself, that I don't mind standing out in a crowd, that I embrace my individuality. It says I'm more than my hair.

What does your hair say about you?

Read this Oprah magazine story to find out what other women are saying about their hair.

© 2009 Christy Bailey

Enough already!

As summer rapidly approaches, and the tank tops and shorts and bathing suits march to the front of the closet, I can’t help but think about skin. About showing skin. About showing unsightly skin.

Suddenly I wish I had been more serious about that diet I started back in January. I wish I had joined a gym, hired a trainer, built an exercise habit. Something. Then maybe I wouldn’t be anticipating the summer season with such dread.

True, I’d like to be trimmer, and fitter, and healthier. I would. But this isn’t another article on how to get into bikini shape in 10 days. Or how to cleanse yourself into a size extra small. Please. (Though you know I’ve considered it.)

No, that’s not it at all. For those of us who didn’t shrink or tighten or tone as much as we wanted, the question becomes: Cover it up or bare it?

Certainly you’ve heard the commentaries. A deejay asserts that women over 35 and over 120 pounds should NOT wear a bikini, under no uncertain terms. A family member tells you it’s time to retire the tank tops until you can reduce the flap factor on your arms. A friend asks if she’s too fat for shorts.

With all this talk about what people should and shouldn’t wear as the temperatures rise, I can’t help but wonder, do we owe it to other people to cover up our unsightly skin?

And who gets to determine what is—and is not—unsightly?

I’m not just talking about fatty cells and cellulite, but also hairless heads.

One time an airline employee told me I couldn’t wear a scarf in first class. I was flying standby, on a buddy pass, and was required to follow a dress code. No jeans. No open-toed shoes. No t-shirt material. No spandex. Check, check, check, and check. Apparently Mr. Snooty Pants thought a headscarf didn’t fit the rules, didn’t look upscale enough for his taste. Nowhere on the list of rules did it say No headscarf. I wish I had whipped the scarf off my bald head and quipped, “Better?” Unfortunately, I wasn’t as strong then as I am now. My eyes watered. I could barely speak. I told him I had a medical condition and he still downgraded me to coach.

From my alopecia support group, I heard about a stewardess who was required to wear a wig on the plane when her hair fell out. Another girl was required to wear a wig at the reception counter at a gym. Seeing a bald headed woman, they were told, would make customers uncomfortable. The airline stewardess bought a wig. The bald gym receptionist quit.

How are we supposed to increase awareness about alopecia and hair loss in women if we are always covering it up?

Sure, there will always be a need for dress codes. No shirt, no shoes, no service at a restaurant. No midriff showing in the office. No Borat mankinis at the neighborhood swimming pool.

But it’s time to ask ourselves: Why is it that thigh dimples and dangling arm fat and hairless heads make us so uncomfortable?

So enough already! I’m heading to the shore today and I am packing tank tops, shorts, and a bathing suit. I might even bare my naked head. If you find any of it unsightly, then by all means, don’t look. But please, keep your mouth shut.

© 2009 Christy Bailey

Is beauty in the eye of the beholder?

"Women will never be equal to men until they can walk down the street bald and still think they are beautiful!" – Stephanie Hawkins*

For a bald girl, I am about as Out There as I can get without going bare. I wear scarves to weddings, dates, work, and job interviews – basically, everywhere. I talk comfortably about my alopecia with anyone who asks, and even those who don’t. And now I’m writing about it. In a public blog. Under my real name. (Honestly, I debated that, but opted for transparency.)

And yet.

I avoid mirrors, especially when my head is bare, like when I first step out of the shower.

After a shower, I still wrap my head in a towel.

Once I’m dry, the first thing I put on is my pañuelo.

Even when I’m alone, I wear a fleece hat to sleep, and not just because it warms my head.

I can count on one hand the people who’ve seen my naked head – two hands if you include doctors, wig store owners, and an arrogant photographer.

The other day, I am waiting at a bus stop in The District, wearing my gray pinstriped pantsuit, when an African American man in an oversized t-shirt, baggy jeans, and a New York baseball cap approaches me.

“You are lookin’ fine today,” says New York. “For a white girl.”

I look behind me, side to side, but see noone. Is he talking to me?

“Jenny Craig be workin’ on you.” His t-shirt hangs to the middle of his thigh. He’s probably a large, but the shirt is at least a triple extra large.

He must be homeless, I think. “I need Jenny Craig,” I say, emphasizing the word need.

“You look like that naturally? Ooh, girl.” He reeks of alcohol.

Ah, he’s drunk. I smile politely. “Thanks, I guess.”

“When I see something I like, I jus’ say it. And I gotta say, you look good.”

I look behind me, side to side, and see a young woman leaning against the storefront, her arms folded against her chest. She is watching us. I roll my eyes in her direction.

He is from New York, he says, tugging on the bill of his cap.

I nod.

He admits to having had a few too many drinks, but he’s in the midst of a divorce, and he’s drowning his sorrows. He doesn’t use these words, but that is the gist.

I look off to the distance as he’s talking, shift my weight from one foot to the other.

Finally, he gets the hint. “You have a great day,” he calls from the intersection, turning back for one last look.

Here’s the thing: My first reaction was to label him as crazy, an alcoholic, some sort of derelict. No man in his right mind would hit on a bald girl. Normal men don’t even notice bald girls.

I did not think, “I’ve still got it!” And I certainly didn't think, "I sure am beautiful."

The truth is, I struggle with my image. I truly believe that bald can be beautiful, but on other people. I don’t consider myself beautiful. When people say I’m beautiful, I don’t believe they mean it.

I am not alone. And this is not unique to bald women (though it very well may be magnified).

According to The Real Truth about Beauty Study, commissioned by Dove in 2004, more women are dissatisfied with their beauty than any other area of their lives, with the exception of financial success. Approximately $230 billion is spent each year by people around the world on products designed to make them feel more beautiful, yet a mere two percent of surveyed women described themselves as such.

As a child, I felt beautiful. I must have. Everyone around me said I was beautiful, and I believed them.

At what point, I wonder, did I stop believing? Was it when they stopped saying it?

Can you feel beautiful if nobody ever says you’re beautiful? If only your mom says it, or your grandma, or your spouse? Is it merely the sum of a lifetime of affirmations?

Is beauty a state of mind or a physical attribute, a weight, a shape, a hair length or color or fullness, the size of a lip pout, the upturn of a nose?

Is beauty defined by others, based on a narrow description created by a society of people, most of whom don’t even meet the strict criteria?

Does the criteria, by definition, need to be strict? If we all described ourselves as beautiful, if we all truly felt beautiful, would it dilute the meaning? If we all were beautiful, wouldn't beautiful be the new average?

I hope we get to find out.

And I hope I live to see a day where bald women walking down the street really do feel beautiful.

Check out the Dove Campaign and the research behind it.

* excerpt taken from "from WOMEN" by Stephanie Hawkins, published in Deluxe Rubber Chicken, a Web-based journal of poetry published from Cheektowaga, NY.

© 2009 Christy Bailey

Blonde? Brunette? Red? Check one.

What is the hair color of a bald girl?

As I consider big changes in my life – new places to live, a new job, making new friends, maybe a new boy – this is the question that keeps me up at night.

It’s such a trivial thing, but I have to be prepared. It comes up. When I get a new driver’s license, I have to check a hair color box. If I sign up for online dating, I have to identify my hair color, so that men with preferences can find me in a search. If I meet friends of friends at a bar, I have to be able to explain how they’ll know it’s me. Usually this is accomplished with a quick “I’ll be the fiery redhead in the Kelly green shirt.” Or, “Just look for the blonde with pink streaks in her hair.” Real people don't carry yellow roses on blind dates for the purpose of identification. They tell you their hair color.

Do I say I’ll be the one with three wiry hairs that spring from my forehead? Look for Squiggy’s twin sister, with hair squeezed into a point at the top of the head, minus the grease, and with a much sparser point, dishwater instead of jet black, and without the full head of hair behind it?

Is my hair the color of these three wiry hairs?

Is it the color of my eyebrows? My eyelashes? The random stray hair on my leg? That way, there’s still some authenticity in the response. Does it have to be scalp hair?

Is it the color of the wig I have to wear in the driver’s license photo? I can’t wear the scarf for a license; head coverings are not allowed in official identification photos. Trust me, I found this out the hard way. If I wear the fancy hair – the auburn, vacuum-seal, custom, natural hair piece made of fine European hair, do I identify myself as a red head? If I wear a cheap pink wig from the costume store, do I say my hair color is pink? Will they let me be photographed for an official identification in a pink wig?

Is it the color of my childhood hair? Until about fourth grade, I was a tow-headed blonde, with white, almost colorless hair. At the start of puberty, I had yellow, golden blonde hair. In middle school, my hair darkened to an ash color. When I was fourteen, I sprayed my ash-colored hair with a lightening product, which turned my hair orange, yellow, and then a platinum blonde only seen on strippers. Should I pick my favorite from among these hair colors?

Is it the color of my hair just before it fell out? The natural color or the enhanced highlighted version? With or without the perm? (Yes, perm. Remember when we all had perms? It's been that long since I had my own hair.)

Is it the color my hair might be if it hadn’t fallen out? I sometimes say that just the gray hairs fall out, which explains why every year I have fewer hairs than the year before. Aging.

In a world where hair color can be changed in a quick visit to a hair salon, with a home coloring kit, or a few spritzes or dabs of temporary hair color, in a world where women change their color on a whim, or hide their gray for years, why would we want to lock in to one hair color on a license? Why should we have to?

And in a world where a driver’s license lasts 10, 12, 15 years, how useful is that information?

Of course, this doesn’t answer my question. I live in a world where hair matters, and the revelation of hair color is the password to enter.

So back to my question: What is the hair color of a bald girl?

What do you think?

© 2009 Christy Bailey

Oprah Got it Wrong

I love me some Oprah, I do. She struggles with her weight. I struggle with my weight. She motivates people. I motivate people. She has a passion for sharing information that can help us improve our lives. I have a passion for sharing such information (though I’ve done it on a much smaller scale). When Oprah ran a marathon, I wanted to run a marathon. And I did run a marathon. Because Oprah inspired me. Because Oprah made me think it was possible.

Oprah usually gets it right. But yesterday, Oprah got it wrong. Okay, the breast cancer stuff was great. And “Breast Cancer Battles” was the topic. She got that right. Of course she did.

But then she made an off-hand comment that made my heart sink. I’ve searched all over the Internet for the exact verbiage but can’t find it. (Note: Oprah really needs to get her show online. Seriously.) So I’m forced to paraphrase.

I think it was during the Maimah segment. God, I hope I’m getting this right. Maimah is this beautiful, thirty-something, African American breast cancer survivor. She is talking about a moment when she’s in the bathroom, crying softly, the water running in the shower so her Mom won’t hear. She’s naked, and bald from the chemo, and she’s thinking that nobody will ever want her again, nobody will ever love her again, not without breasts, not without hair.

Oprah is being compassionate and supportive. She is nodding. But the hair grows back, she says, the hair always grows back.

I cringe.

Yes, the hair grows back after chemotherapy. But with that one comment, Oprah has just perpetuated the belief that you’re only okay with hair.

She gets that you can be okay after a double mastectomy. She gets that you can be strong and courageous and beautiful without breasts, and with scars, but she doesn’t get that you can be strong and courageous and beautiful without hair.

I want to grab her shoulders and shake her.

Maimah gets it.

"I had this whole facade of being superwoman, always being perfect. Breast cancer strips you of that because you realize that's not important," she says. "All that matters is what's inside.”

And she specifically mentioned the hair.

Check out the slideshow of all the brave breast cancer survivors, including Christina Applegate

© 2009 Christy Bailey

It Starts at Birth

"It's a girl!" soon leads to comments about hair. "Oooh, what a head of hair!" they say. It's so soft, so dark, so blonde, so messy, so short, so long, so straight, so fine, so thick, so cute. Or maybe they don't say anything about the hair, just that it will grow in time. Which prompts Mom to run out and buy a hairband with a giant pink bow at Target. Girls learn from an early age that hair is important. Important enough to warrant dozens of hair decoration products and a drawer to store them in - metal clips and plastic barrettes and bobby pins and snag free pony tail holders with fabric flowers or tiny crystal balls. Important enough to demand daily attention - shampooing and conditioning and styling, often accompanied by the sweet scents of pineapples or tangerines or lilacs or spring meadows. Important enough to require suffering - the real tears cried when Mom brushes the tangles out of your hair. Important enough to garner compliments - and advice - from strangers. "What beautiful long hair you have, my dear, don't ever let your mommy cut it." Important enough to attract the gentle touch of loved ones, Mom running her fingers through your hair, Aunt Sally tucking it behind your ear, Daddy smoothing down a flyaway hair at a picnic, Grams caressing your hair as you tell her about your day.

I don't remember a time in my life when hair wasn't important. So imagine my surprise, and horror, when it all of a sudden fell out. I was 26 years old when alopecia areata attacked my hair follicles and robbed me of hair, and along with it, my drawer of hair decoration products, the required daily attention, the compliments, the caresses and strokes.

My journey to self acceptance has been a long one. A bumpy one. An emotional one. Along the way, I have come to know more than I ever imagined about treatments, and wigs, and beauty, and strength, and compassion. I've learned a lot about myself. And for reasons I can't explain in one single post, I've also learned about scarves, which have now become my hair - well, more like head - decoration product of choice.

Sometimes I think my journey is over. I've made my choice about how to present myself and I'm okay with it. I own it: the girl with the scarves. That's me. But I've also learned that journeys are never really over. Every day I face a new comment or challenge or dilemma. Every day I have to explain or justify my choice or even question it. Four million Americans suffer from alopecia, but three hundred million Americans don't. Of those three hundred million, many have never even heard of alopecia. And until everyone knows and understands and accepts girls without hair, my journey won't be over.

© 2009 Christy Bailey