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.