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.
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.
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.
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.