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

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

The Sisterhood Fraud

It happened again.

I am shopping at Macy’s when a curly-haired brunette catches my eye from across the circular clearance rack.

“Chemo?”

“No,” I hold her gaze. “Alopecia.”

“Ah. I know alopecia. Your hair will grow back.”

In my alopecia support group, I’ve known alopecians whose hair grew back. Jeanne’s regrowth was triggered by pregnancy. Something about the hormonal changes of carrying a child reversed the immune system’s attack on the hair follicles. Her hair fell out again post-pregnancy, but for a time she got to feel the wind blowing through her hair without the slightest bit of worry. Lorna got her hair back after getting a series of steroid shots in her head. That’s a common treatment for alopecia, but only for the short-term, and usually for small patches instead of whole heads. Most doctors won’t even do it in cases like hers. But Lorna is articulate, and clever, and she talked a hesitant doc into it – with great success. Several other ladies got their hair back unexpectedly, spontaneously, for no known reason. Alopecia is unpredictable like that. You never know what could happen.

I haven’t had a full head of hair for sixteen years. At this point, it is highly unlikely my hair will grow back.

But to my fellow shopper, I don’t say that.

She goes on to tell me she’s a hospice nurse, and a cancer survivor. “I’m sorry to bother you, I just can’t help myself. I get so passionate about helping people with cancer.” She looks at my scarf, the dressy black one I tied on that morning for a meeting in The District. “And I just thought, well, you know.”

Sometimes I feel like a fraud.

Well-meaning women see the scarf as a signal that I’m in the sisterhood, an invitation to connect. They tap me on the shoulder while I’m reaching into the grocery store freezer. They approach me while I’m sitting at a restaurant waiting for a friend. They lean over at a wedding and place a hand on mine, gently, tenderly, and tell me I’m going to make it. They’re not talking about the hair; they think I have cancer.

Each time, I provide a brief, educational statement about my own disease. Just like the Macy’s shopper, they listen. They wish me well. They usually apologize.

No, I want to say, I’m the one who’s sorry, for drawing you in unnecessarily, for misrepresenting myself, for committing sisterhood fraud – as if scarves are reserved for the sick, the domain of cancer patients actively undergoing chemotherapy.

From Merriam-Webster:
Fraud \ˈfrȯd\ noun
1 a: deceit, trickery ; specifically : intentional perversion of truth in order to induce another to part with something of value or to surrender a legal right b: an act of deceiving or misrepresenting : trick
2 a: a person who is not what he or she pretends to be : impostor ; also : one who defrauds : cheat b: one that is not what it seems or is represented to be

I do not wear scarves to solicit support from people whose lives have been touched by cancer. I wear them because they’re comfortable, and fun, and affordable. I am pañuelo girl, the girl with the scarves.

And in all honesty, I felt more like a fraud when I wore wigs, especially once I upgraded to the vacuum-seal, custom hair pieces made of fine European hair. People asked where I got my hair cut, what dye color I used, how on earth did it dry so fast? I could have fessed up, but I didn’t have to: $3,500 buys you a natural look, one that easily fools people.

Of course, I didn’t want to discuss alopecia back then. A headscarf, especially on a bald girl, can be a conversation starter. You have to be prepared for questions. You have to want to explain and educate.

Shortly after the Macy’s shopper and I part ways, she pops her head back around the corner.

“You know, you don’t really need hair,” she says. “You’re beautiful without it.”

Maybe the sisterhood extends well beyond cancer.

© 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

Secrets of a Mascara Lover

I was lying in bed last night when all of a sudden I felt something roaming around my eye socket, poking and stabbing my eyeball: a single lash. I blinked, rapidly, to flush it out. I rubbed my eye, blinked, rubbed, blinked. Nearly scratched my eye out. Squeezed my eye shut and rotated my eyeball up and around the socket. Mashed my eye with my entire fist. I finally did get the lash out, but it wasn’t exactly a relaxing way to nod off.

Once upon a time, I celebrated stray lashes. I gently placed them on my index finger, closed my eyes, and blew them into the Universe, never to be seen again. In return, I wanted the Universe to grant me the wish I wished while propelling the lash into the air. The wishes never came true. Or maybe they did, only I never realized it, because they showed up in an alternate form. Maybe when I wished to go through life with a loyal, affectionate partner who would love me unconditionally, that’s when the Universe sent me a dog. Maybe when I wished for self-acceptance, or beauty, or for a sign, any sign at all, that I had a life purpose and would discover it one day, that’s when the Universe took my hair.

In the early days of my alopecia, I lost all my eyelashes. One day I was cursing the Universe for giving me short, dull lashes; the next day I was begging the Universe to give me short, dull lashes. When I was outdoors, I had to cover my eyes with my hands like a celebrity fending off photographers. Only it wasn’t paparazzi I was battling, it was pollen, and dust particles, aiming straight for my unprotected eyes. Eventually I had to trade in my contact lenses for glasses, just to maintain some semblance of eye health.

When I was a kid, I looked like my niece, Lindsey. Family members get our photos confused. “Oh, what a gorgeous picture…is it Christy or Lindsey?” I had the same white blonde hair, the same smooth skin on my apple cheeks, the same quiet smile that said I knew something you didn’t. But Lindsey has something I never did: long, thick, lush eyelashes that attract second glances and unabashed flattery. Long eyelashes are associated with beauty in our culture. That’s why there are television commercials about mascaras, and magazine articles about why it is so essential to use eyelash curlers and how to create long, thick, lush lashes without getting clumps.

My eyelashes grew back, but I worry that I’ll lose them again, that they’ll come and go, or just go, forever. I have come to accept my baldness, but I am not sure I can accept being lash-free. My lashes are short, and dull, but they give my face structure. They frame - and showcase - my eyes. They are a reason to buy mascara. And somehow, despite all my progress towards self-acceptance, despite my quest to redefine beauty and embrace individuality, I secretly love applying mascara and feel more beautiful with longer lashes.

© 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