Wednesday, August 5, 2009

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.


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.

pañuelo of the day: Tuesday, August 4, 2009

Not sure why I look so flustered. Can't be the scarf--it's one of my faves, made by Mom just for me, a perfect option for dress-up and casual events, a perfect choice for summer or winter. I can only guess that the look on my face is in response to the abundance of zucchini that has suddenly taken over my life. Parmesan crusted zucchini rounds, anyone? Chocolate zucchini bread? Zucchini omelettes? Zucchini lasagne? Just how much can you do with zucchini? I'll let you know in a couple of weeks.

Monday, August 3, 2009

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

pañuelo of the day: Monday, August 3, 2009

Okay, this wasn't taken today, and it's not a pañuelo, it's a fuzzy hat. But it's an important hat, because it's what I sleep in every night. Yes, even in the summer. I'm on the right side of the photo, and that's Dee on the left, on our girls vacation last September.

pañuelo of the day: Sunday, August 2, 2009

Again, I like the darker scarves as opposed to the lighter ones. But Mom found this fabric and whipped up this scarf, and it does match some of my clothes, so...I still wear it.

pañuelo of the day: Saturday, August 1, 2009

This is another scarf made with love by Mom. Thank God for Moms.

pañuelo of the day: Friday, July 31, 2009

The sun finally came out again today, and I couldn't wait to soak it up.
This scarf is from Coldwater Creek. I bought it at last year's summer clearance sale. They had tons. It wasn't cheap, maybe $7 at deep discounted prices. But still, it's fun, and I do like pink.

pañuelo of the day: Thursday, July 30, 2009

This brown and blue and khaki scarf was made by Mom. I like the darker scarves best, but this one does match a whole lot of clothes.

pañuelo of the day: Wednesday, July 29. 2009

This black-and-white bandanna scarf is from Hobby Lobby.
Just in case you're wondering, the background is a painting of Yellow Dog, may he rest in peace. Greg Johnson painted the portrait. I can connect you to him if you're interested in commissioning a portrait of your beloved pet. He's good.