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.


L.T. said...

As always, I'm amazed by you, Christy! Thanks for keeping up the blog, writing about your experiences, and just being a generally cool person.

Also, I feel our paths – although very different – have some parallels. I've inserted my words into one of your paragraphs that spoke to me:

"When [I realized I was a man stuck in a female body], 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."

mojee said...

keep on keeping on, christy. the best way to lead is by example. remember it took you a long time to arrive and let's hope that woman at your picnic gets there.