Why I’m Pro Bald Barbie

There’s a growing movement to get Mattel to create Bald Barbie. The rationale, as I understand it, is to provide a relatable doll for young girls who’ve lost their hair due to medical conditions and treatments. A doll they can see themselves in. As a long-term alopecian and recent cancer survivor, I support that.

But that’s not why I’m Pro Bald Barbie.

Let’s be clear. I’m not exactly Pro Barbie. Sure, I had quite a collection when I was a young girl. But I also grew up with a warped idea of what it means to be a woman. My waist was never narrow enough; my chest, not full enough; my eyes, not wide enough; my nose, not small enough; my legs, not long enough; my thighs, never, ever slim enough…The list goes on. Was this Barbie’s fault? No. But she didn’t help. I’m not sure that any girl ever looks at Barbie and sees herself, and I’m not sure that Bald Barbie would change that. What she could do, however, is help normalize female baldness in our society.

I don’t think people realize what it takes to be female and bald in America. I’m not talking about chemo patients, though they experience their own hair loss challenges. What I’m talking about is the experience of girls and women facing long-term hair loss due to alopecia.

Yes, there are wigs. Most bald women wear one, especially in the beginning. For those who have the money, there are wigs so fancy even your closest scrutinizers won’t guess you’re bald. But be prepared to pay three thousand dollars or more for this option, a small price to feel normal, you’ll tell yourself. Even with the most natural of wigs, however, eventually you’re going to have to explain why you avoid immersing yourself in water, sharing hotel rooms, gale force winds, open gym showers, and anything that involves turning you upside down. Eventually you will have to tell the guy you’re dating that your scalp is bare, or patchy, and that your hair is really a wig.

Let’s say you choose to be bald and beautiful or to adorn your head with scarves. Be prepared for people to assume you have cancer and to approach you with their concerns and good wishes—all the time. Be prepared to explain that you have alopecia, not cancer, an autoimmune disease that causes your body to fight off your hair. Every now and then, you may be accused of making a mockery of cancer when someone finds out your hair loss is caused by something else. Be prepared to respond with dignity. On rare occasions, you may be called an alien, a pirate, or a lesbian feminist Nazi who just wants attention. Be prepared to laugh it off, have fun with it, or ignore it, depending on the situation. Be prepared to explain your hair loss in job interviews, obtain permission to wear a head scarf in passport photos, maybe even remove your scarf on command for an ID photo. Be prepared to be stopped cold in the driver’s license office by the simplest of questions: What is your hair color?

Though I embraced my hairlessness years ago, I still struggle to feel normal without hair. Would a doll in my own image help me feel better about myself? Maybe. You know what would help more? If the rest of the world understood, accepted, and embraced bald females.

I see Bald Barbie not just as a token doll for those who are familiar with hair loss, but as a conversation starter and educational tool for those who aren’t. If every household contained one Bald Barbie, maybe the next generation would grow up thinking that bald girls are normal. As a result, maybe bald girls wouldn’t feel so isolated, ashamed, unattractive, and unworthy.

I support Bald Barbie, even with all her unrealistic proportions, because I think her presence could help create a world where it’s ok to be bald and female.

I’m Pro Bald Barbie because I believe she could be a game changer.

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.

Achieving Self-Acceptance

When I attended my first alopecia conference last June, I met the most amazing hairless people. Some wore headscarves like me. Others were more daring, showing off scalp tattoos—butterflies and rainforest flowers, sunbursts and peace signs. Most simply displayed their smooth, shiny domes proudly, parading from conference site to ballpark, to restaurants and bars and clubs, one stunning scalp after another snaking through the streets of downtown Indianapolis.

I found the bald heads to be gorgeous. Provocative. Inspiring. But I did not expose my own hairless scalp during the conference.

As photos emerged of my scarf-wrapped head against a backdrop of bald and beautiful, however, I began to think I was still hiding, no longer beneath a wig but under the cover of my pañuelo. I began to question whether I had truly accepted myself, my alopecia, my hairlessness. I began to wonder if boldly bald and beautiful was the next logical step in my self-acceptance journey, the step that would signify my arrival at a self-acceptance endpoint.

By mid summer, I was ready to do what I couldn’t at the conference. Not amongst other alopecians, but to a population I deemed equally safe—people I didn’t know and would never see again.

In July of 2010 on a crowded Dominican Republic beach, I removed my pañuelo and bared my hairless scalp in public for the first time.

I loved how the elements felt against my skin—the ocean breeze, the sun’s heat, the cool water—how they contacted me directly without having to permeate fabric. Without the pañuelo cover, I felt free. Exhilarated. Bold. Like a first-time skinny dipper.

After an hour or so of sun exposure, though, I’d had enough. I re-wrapped my head and grabbed a bite to eat or joined a spin class. Then I’d do it again. Unveil. Re-wrap. Unveil. Re-wrap.

When I dressed for dinner, I chose a black pañuelo to go with a new sundress. A violet to go with a halter top. A deep blue to match my eyes, the cloudless sky, the Caribbean ocean, and a v-neck t-shirt I wore with a jean skirt. In the pañuelo, I didn’t feel free or exhilarated or bold. I felt comfortable. I felt confident. I felt like me.

Every day for nearly 10 years, I’ve selected a pañuelo to wear. I’ve uncurled the fabric roll, wrapped the scarf around my head, and secured it in place with a double knot. I love this ritual. I love the feel of the soft rayon in my hands. I love finding just the right pañuelo for my outfit, or just the right outfit for my pañuelo.

The freedom and exhiliration? They’re fantastic. They’re the reason we jump out of airplanes and cross over the jungle on a zipline. They’re why we strip off our clothes and cannonball into a lake or dip au naturel into a natural hot spring.

But they’re not the same as self-acceptance.

Some people feel most comfortable with their bald head exposed. Some feel most like themselves in the nude. If that’s what makes them happy, then by all means, that’s exactly what they should be doing, as often as possible.

This morning I counted the pañuelos in my collection: 102 fabric squares that make me happy.

For me, accepting my bald head isn’t about baring it any more than accepting my body is about joining a nudist colony. For me, it’s enough to be able to bare my head, if only for a few days in a foreign country. Maybe for me, it’s not even about baring my head at all, but being comfortable not baring my head, if that’s what I choose.

One day I may revert back to wigs. One day I may decide to join the bald beauties/beautiful baldies. Life changes. We change. Endpoints shift.

It’s cliché to say the journey is the destination, but it’s true. All I can do, all anyone can do, is enjoy the ride.

Not

Negation can be an effective identifier. If I say, for example, “I’m not that kind of girl,” we all understand what kind of girl I am. Or what I say I am. During my two years of adrenaline-induced bliss as a marathoner, I called myself a runner, but not a fast one. The distinction was important. Don’t expect me to win any races. Don’t invite me to run with you if you’re doing 7-minute miles. Or 8-minute miles. Or 9-minute miles, for that matter.

For the past few years, I’ve built my identity on a negation. I have alopecia, not cancer. I am hairless, not a chemo patient.

As a bald girl in a scarf, I’d often been mistaken for a cancer patient. That’s what people know. Bald head + headscarf = chemo. It was an honest mistake, one I sometimes felt responsible for. If only I could be comfortable in a hot, scratchy, heavy, expensive wig, then people wouldn’t have to be so uncomfortable with me. If only I could tolerate a wig, then people wouldn’t falsely assume I was part of the cancer sisterhood. Or in October, the breast cancer sisterhood.

The deluge of pink that occurred every year at this time—from cereal boxes to football jerseys—would heighten awareness about breast cancer and compel strangers to show me their support. Instead of the Knowing Look from afar, I would get Pep Talks from survivors and their families. I would get pats on the back, a grasp of hands, tears welling in someone’s eye. In October, more than any other time of year, people wanted to connect—not to what I was, but to what I was not.

Aware of the confusion and not wanting to contribute to it further, I tried to distance myself from the cause. I stopped Racing for The Cure years ago, when I first started wearing headscarves. I avoided wearing pink during Breast Cancer Awareness Month, just so I wouldn’t mislead anyone. Last year, I purposely didn’t buy the pink breast cancer awareness appointment calendar I’d eyed at the office supply store. My choices all centered around one message: I am not them.

Last October for the first time I finally sat down to write about sharing a Signature Look with cancer patients. I reflected on what it’s like to hear “at least it’s not cancer” over and over again, as if that’s somehow comforting, as if I didn’t say the same words to myself when I found myself grieving over the hair loss and then feeling guilty for my grief. I thought about all the times I’d heard people respond to a chemo patient’s concerns about hair loss with an “at least it will grow back.” I was thinking about how I might reconcile the two. I pondered the audacity of being a bald woman in a scarf and yet not having cancer. That’s what a stranger said to a friend who’s had alopecia her whole life. A young woman who’s never had to shampoo or blow dry or shave a single hair. Ever. A fellow alopecian who’s managed to grow up confident and self assured and beautiful despite not having hair. How dare you have the audacity, said the stranger, to parade your bald head around Target and not have cancer. How dare you garner my sympathy and concern when you don’t deserve it.

It felt like an important topic, an exploration worthy of resurrecting this neglected blog. But when the time came to hit the post button, I couldn’t do it. It didn’t feel right. Or it didn’t feel like the right time.

The problem with basing your identity on a negation is that it can be hard to maintain. The not-fast runner improves. The not-that-kind-of-girl becomes exactly the girl she once disdained. By choice or necessity, it doesn’t matter. In an instant the "not" you’ve clung to can slip out of your grip. You become what you were once not.

Two days after last year’s Breast Cancer Awareness Month wrapped up, my doctor found a lump in my breast. In mid November, I was diagnosed with breast cancer.

I’ve been reluctant to broadcast the news. Despite being completely open about my alopecia, I’m still a very private person when it comes to my personal life. Opening up private medical records on a public forum is risky for all the reasons you might imagine. Most importantly, though, despite going through surgery and chemo and radiation, I still identify more with alopecia, not cancer. Hairless, not chemo patient. I’ve been making that distinction for so long—one, not the other—that now I can’t seem to embrace both, alopecia and cancer.

Earlier this year in an interview with Ellen DeGeneres, Wanda Sykes, long time comedienne and now celebrity breast cancer survivor, talked openly about her diagnosis for the first time. In the beginning, she said, she kept it quiet. “How many things could I have? I’m black, then lesbian. I can’t be the poster child for everything!”

Sometimes you don’t have a choice.

Like Sykes, I have what sometimes seems like too many things. I can’t be the poster child for all of them. But that doesn’t mean I have to live in denial either. I don’t have to continue clinging to the "not" when it no longer applies.

I’ve neglected this blog for the past year in part because I haven’t known how to continue representing the "alopecia, not cancer" perspective when I'm no longer "not" cancer. I haven't known how to be authentic and true and still keep the "not cancer" shift a secret.

If there's one thing my alopecia has taught me, it's that The Closet is a dark and lonely place. So on this last day of Breast Cancer Awareness Month, I am coming out as yet another survivor.

My hair didn’t fall out because of chemo, and it’s not going to grow back now that I’m done with treatment. After sixteen years without hair, I don’t expect to ever have hair again. I don’t know how being a breast cancer survivor will change my platform or my message. I don’t know if I’ll write about it or be outspoken about it. I don't know that I'll ever be its poster child. But I know better than to say never.

What I'm sure about is this: being a breast cancer survivor will infiltrate my sense of self. It will affect how I see myself and how I present myself.

The good news is that because of my alopecia, I’ll be more prepared for the shift.

What Ever Happened to Compassion?

No spots are available when I pull into the gas station on a busy Saturday morning—none with a pump to my left, anyway. The gas tank on my car resides on the left side. I need a pump to my left.

I only wait for a couple of seconds before a spot opens up. A spot on the other side of the station. A spot with a nozzle to my left.

My spot.

I drive around the perimeter of the station, throw the gear into reverse, and prepare to back into my spot.

Except.

A car has pulled up behind me, blocking my path.

Gas stations are notoriously hard to maneuver. Each aisle has only enough room for the cars pumping gas. There is no room for a car to drive in between. A motorcycle, maybe. But definitely not a car. That’s why I had to go around the whole station. And now I’m waiting to reverse into my spot, and there is no room next to me for this car to pass. I’m stuck.

I am hoping the driver will back up so I can pull into my spot and get out of her way.

But that’s not what she does.

This woman who sees that I’ve targeted this spot, who must know that she is the only obstacle between me and the pump, who has not waited patiently for a spot to open up like I have—pulls into my spot.

My spot!

Surely she will realize her mistake. She will look at my car, see that I am poised to pull into the spot, and she will place her hand over her chest, say, “Oh my gosh, I’m so sorry,” and hightail her car out of my way.

But that’s not what she does.

This woman gets out of her car, removes the nozzle from the pump, and starts filling her tank. From my spot.

My mouth gapes open. I call her names. I curse her.

But now she’s got the pump from my spot in her gas tank, so I have no choice but to move to another spot, one that has just opened on the other side of the gas station. I drive back to the side where I started, do the three-point turn all over again, and plant my car next to another pump.

I am still cursing her under my breath as I swipe my King Soopers card to secure my 10-cents-per-gallon discount. I am still cursing her as I swipe my credit card for authorization. Approved. I remove the nozzle.

Suddenly, the lady working the booth comes running towards me.

What now? The booth lady never leaves the booth.

Did I drip gas on the asphalt? That’s illegal in some states. When driving through Maryland last year, I saw a sign at a gas station: If you drip gas on the asphalt, you are responsible for cleaning it up. And you are fined. (Or maybe you’re just fined if you spill and don’t clean. But still.) I wasn’t aware of any such law in Colorado.

Booth Lady positions her face to within a couple inches from mine. “What ever happened to compassion?” she asks.

Oh. That. She thinks I have cancer. I get that a lot. Not so much: What ever happeend to compassion? But a lot of people tell me they’re in remission or in treatment or that their sister or aunt or best friend is. They say one of the following:

a) “You’re going to be okay.”

b) “I’ll pray for you.”

c) “Can I buy you lunch?”

Personally I prefer c) “Can I buy you lunch?”

I wait to see which option Booth Lady will choose. Probably not c) —I only get c) in restaurants.

She continues. “I can’t believe that lady just cut you off. It was clear what you were doing.”

Not: Calm down. Not: You’re overreacting. Not: Get some perspective. Not even: Everything happens for a reason or She’ll get what’s coming to her or Maybe she didn’t realize what she was doing.

Validation.

Suddenly I don’t care about the spot stealer. I no longer feel the desire to curse her. Once someone acknowledged I was wronged, I could move on to wrapping up my transaction and getting on with my day.

It sounds so simple.

At a recent alopecia support group meeting, we discussed some of the responses we’ve gotten from people when sharing the news about our hair loss for the first time. The one most people preferred was “That sucks.” Because it does. Losing your hair sucks. And noone telling you that you’re overreacting or that it happened for a reason will help you accept the situation any faster.

I know the rules.

When I go to a job interview, I always wear a suit. I wear nice shoes, even if they hurt my feet. Sometimes I get a manicure.

What I struggle with is the neat, professional hairstyle, because I don’t have hair.

Sure, I could wear my wig. That’s what I used to do years ago, back when I wore wigs, back when I hid behind my wig and nobody even knew I had alopecia.

But the $3,500 wig has been packed in a shoebox since 2002, the year I walked away from everything I knew and joined the Peace Corps.

It wasn’t easy. I struggled with the change from fancy hairpieces and wigs to bandannas and scarves.

Some of the volunteers thought I had cancer, as if the Peace Corps would have accepted an active chemo patient into service. They didn’t ask me about it, they asked my friends.

Some of the people in my small, volcanic island town thought I was hiding Rapunzel hair under the bandanna. “What’s your hair like under there?” they’d ask. “Is it long and beautiful?” I’d roll my eyes, throw a sideways glance their way, try to laugh it off. But I wasn’t laughing.

I wasn’t laughing when a photographer instructed me to remove the bandanna for my official permanent residence ID card photo. I wasn’t laughing when a Peace Corps doctor said I would probably want to wear a wig to the baile (dance), and not the bandanna. I wasn't laughing when an airline employee bumped me out of the first class cabin because he thought my nice headscarf wasn't dressy enough for the buddy pass dress code. I wasn't laughing when another airline employee looked at my driver's license photo with the wig, and then looked at me with the scarf, and said I looked better before.

There were times I would have given anything to have my wig back. There were times I wished I hadn't made the change to scarves.

But, gradually, I got used to the look, along with the comments and questions and challenges that came with it. Today I am the girl with the scarves, and I like it that way. I couldn't go back to wigs now.

But are headscarves appropriate job interview attire?

Maybe if you have cancer.

And therein lies the dilemma.

If I wear the scarf and don’t mention it, the interviewers will think I have cancer. They’re not supposed to ask about that kind of thing, but they will make assumptions—assumptions that affect me and my chances for proceeding to the next round or getting that job offer.

If I wear the scarf and do mention it, things get awkward fast. I’m talking about personal, private, medical stuff that’s not typically discussed in the interview format. It’s like saying, by the way, I have a wart on my big toe, and I just thought you should know that upfront.

It’s not that I mind talking about it. I just wonder whether or not I should. I wonder how to approach it. And I wonder if maybe I’m making things harder for myself when I don’t have to.

And yet.

If I were to wear the wig, I would feel like I had sold out. And that’s exactly what I’m trying not to do.

How will the world ever accept women without hair if nobody steps up and demands acceptance?

How will the world ever get used to women without hair if there are no women willing to present themselves without hair?

And really, would I even want to work for a place that wouldn't allow me to wear scarves to the office? Would I want to work in a place where the range of acceptable images didn't include my scarf look?

I need to figure this out fast. My next "interview" is coming up, an oral examination by a panel of experts about my knowledge, skills and abilities in healthcare communications.

I need a plan. I've got my ideas, but I'm open to yours. What do you think?

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.