“Once upon a time, there was a little girl who had no hair. She didn’t always have no hair — when she was even littler than little, she had lots of hair. But it started falling out, bit by bit, until one day she didn’t have any hair at all.”
I’ve never read a children’s book that starts like that. And I’ve hunted for them. Because this happened to one of my nieces when she was in primary school. I searched and searched for books that I could send her to tell her that she wasn’t alone, and that it really didn’t matter whether she had hair or not. But I couldn’t find anything until she was much older, when Gail Porter wrote a book about her own experience of alopecia. Gail’s started when she was an adult, and while it was no doubt traumatic, by the time we’re adults we’ve hopefully developed some level of confidence and sense of self as we face the challenges that life throws at us. For my primary-school-aged niece, her alopecia started when she was just beginning that process, and there weren’t any girls or young women she could look to for inspiration.
So, with my niece’s permission, I’m going to share her story in the hope that it might reach other young women facing alopecia, or facing any other kind of challenge to their (and when I say “their” I mean modern society’s) conceptions of beauty. Because how she’s handled her alopecia, is an inspiration to anyone.
Emily’s family always talked about her alopecia openly with her, and yes we talked about all sorts of options should she wish to pursue them. Alternative therapies, supplements, lotions and potions, hats, and wigs, but it was never in a way to make her feel that she had to do those things, just to let her know that there were options if she wanted to look into them. Or she could just accept it. We always told her that she was beautiful and perfect just how she was. Because she was, and still is. But she chose to wear a bandanna that covered her head, and tied at the back.
On every trip back to the UK, at some point during the conversation, I always asked her how she was feeling about her alopecia. And every time, she’d burst into tears. When she’d got out all the tears, we’d then have a chat about it, and I’d feel a bit guilty but stuck with always giving her the message that she could talk (or cry) anytime she wanted to. To be fair, she is a sensitive soul anyway, and it doesn’t take much for her to get tearful (saying goodbye on every trip became a standing joke between us both as well as her parents as we’d stand waiting for her to start bawling and then that would set me off too).
But on one trip, I flew back to see a quite different girl. At seventeen years old she had come out of her shell and blossomed into a wonderful young woman. Confident. Holding her head up high. And she didn’t stop talking. When I asked my usual question about her alopecia, she simply shrugged and said, “My hair or lack of it doesn’t define me.” And went on to tell me about all the money she’d saved on hair products over the years.
A year later I gave her a trip to Japan for her big birthday, as I had done with her older sister. Emily joined me in the North-East of Japan for three weeks, working alongside me on my volunteering projects, throwing herself into learning the local taiko drumming, not caring that she didn’t speak the language, or that she was roughing it on the floor at night alongside me. One night I noticed that she always slept with her bandanna on and I asked her about it — she said that she felt uncomfortable with a bare head when sharing a room. “Even with me?” I asked. She thought for a bit then took the bandanna off, and I told her she looked beautiful. Cue the tears, of course. And the giggles from both of us at the suntan lines going across her forehead.
Emily’s now 24. She did brilliantly at university. She loves her job. She recently got engaged. She sends me top secret photos of how she’s thinking of styling her head for her wedding day. She goes on hiking and canoeing adventures. She travels the world to spend time with her future in-laws. She dresses up as Harley Quinn for Halloween. She’s fit and healthy. She has a massive smile and gives great hugs. And she still doesn’t stop talking. She is a wonderful niece, daughter, and sister.
And a couple of weeks ago, she took her bandanna off and had her head tattooed. Not only accepting alopecia, but embracing it. I have never felt prouder.