Am I the Better for My Baldness?

The definition of alopecia is not clear-cut, even amongst those who have it.

The word itself simply means “hair loss.” If you use the term “alopecia areata,” you’re talking about autoimmune-based hair loss, as well as its most basic form — that means patchy loss vs. the whole head (“totalis”) or body (“universalis”).

Some define themselves simply by the aesthetic nature of the disease but will quickly point out they’re not sick. I did the same for years and suspect this response roots simply in not wanting to be mistaken as someone living with cancer. But if I ever do get cancer, hair loss could well be part of the challenge and change I face.

image (7)
Hebdon Photography
image (9)
Hebdon Photography

Whether it’s a disease, condition or expression, alopecia areata is an indication that there’s a struggle going on between my immune system and my hair follicles. Sure, I’m glad it’s not cancer. But my sense of self has been challenged because hair loss is so aesthetic. Alopecia — in my case, totalis — is one element of my history and my day-to-day experience. Am I the better for it? I am (just) me.

When I participated in a professional photo shoot early in 2014, there were two things I didn’t know. I had not met the photographer, Mike, before but felt like I had, given the extent to which we corresponded prior to the shoot. And I arrived with my makeup in my bag, which remained unopened. Unbeknownst to me, Mike hoped he could explore the openness of my appearance. That’s what we did. I didn’t put a speck of powder on my face, and I eventually removed a layer of clothing so I was even more bare. I expected to see the photos weeks later, but they started arriving soon after the shoot. Mike wanted to know what I thought of the photos as I looked at them. And soon enough, my words were linked with my image.

image (8)
Hebdon Photography

The symbolism of this was not lost on me; my most clear voice emerges in writing. While I was taking in the whole of me — and I liked her — it was my eyes to which I was drawn, not my bare head. It was my eyes that reflected back, the person I’ve always been and am still becoming.

image (10)
Hebdon Photography

I’m a drop in the bucket alongside many other “Alopecians” who have stepped forward in image and text to speak of their difference. We’re less and less afraid to raise our voices or show our faces, regardless of how we’re perceived. But much like baring my head vs. covering it, those of us who step forward reflect those who are equally mighty in the quiet around us.

Step forward. Like us on Facebook.

Find this story helpful? Share it with someone you care about.


Precious Photos Show the Unparalleled Bond Between a Girl With Autism and Her Cat

We’ve read and reported on a few stories about therapy dogs. This story is about a cat, though — one who’s helping a little girl with autism connect with the world. In the photo above, 4-year-old Iris Grace, a child who’s made headlines before for her incredible paintings, snuggles up to her four-legged best friend, [...]

On Learning My Second Child Can Move Her Legs

My daughter can move her legs. I figured she would. Why wouldn’t she? Lightning doesn’t often strike the same place twice. And by lightning, I mean spina bifida. And by place, I guess I mean… me. I knew she would move her legs. Still, I was not prepared. For the triumphant force of it. For [...]

To the Doctor Who Diagnosed My Daughter

Dear Dr. M, It’s not like I hadn’t heard of you before we walked into your office that day. Your reputation as the best developmental paediatrician around is why we stood in front of you. I had done the research on you, both professional and personal. I knew who I was looking at, but I [...]

Here’s What Happened When I Decided to Reach Out to Strangers

In the 1980s there was a national advertising campaign for the phone company AT&T. Reach out, reach out and touch someone! Reach out, call up and just say hi, urged the happy singing voice on the television commercial. The campaign was a huge success that resulted in a large increase in sales for the phone company. This [...]