On Alopecia: Living and Thriving Bald

The Magazine: On Alopecia: Living and Thriving Bald
I have Alopecia, an auto-immune condition that causes hair loss.

My hair fell out when I was eighteen months old and it never grew back. You’re catching me at a very good moment—in the past couple of months, I’ve really sunken into myself, and I have finally really understood my worth. It hasn’t been because of a job, or a boyfriend, or a new body, or botox—it’s all been an inside job for me.

When I think way back, to my very early childhood, I can’t tell if I have true memories or if it’s what I’ve pieced together by looking at photos— I do feel like I was very free, and that I returned to my inner-child and inner-self in the process of accepting who I am. And so, it’s pretty dope.

When we’re born, we’re these perfect little beings. We haven’t formulated ideas about ourselves. At the age of four, my parents brought me to a psychologist, and the psychologist suggested that I wear a wig. My parents were trying to protect me—they were afraid of kids making fun of me. And as soon as we put that wig on my head, everything changed.

No one told me that it was wrong that I had no hair, but we were covering it, and so that sent a message—even if it was an unspoken message, it was a message. And I decided that my Alopecia needed to be a secret. I thought, the kids at school wouldn’t want to be my friends if they found out I didn’t have hair. And so I just spent a lot of time and energy hiding who I was. When I look at my friends who have kids who are four or five, I can’t believe I wore a wig at that age. That’s so rough for me to think about.

When I’m going through a hard time as an adult, I say, “You’re fine, you walked around with so much fear and so much shame, you don’t have to do that anymore.” So I’d say for me, from age five until eighteen, when I stopped wearing a wig, I always straddled the line, from being who I really, truly was, and being in total fear.

I truly believed, for most of my adolescence, even when I was really little and I had a crush on a boy, that I was not what the boys liked. From a very young age, I had a crush on a boy who did not want to date me. I just remember running after these boys who didn’t like me, and I put all of my emphasis on what other people thought about me, it wasn’t just boys, it was girls, it was everyone—I needed you to tell me I was okay, and my external desire for external validation consumed me. I just wanted to be accepted and to be loved.

If you are an increasingly chubby Jewish girl with a wig, growing up in Long Island where everyone is named Megan and has a blonde ponytail, the desire to feel okay in the world, validated and loved, is extra intense.

I realized when I was sixteen that I wanted to stop wearing a wig, and it took me until I was eighteen to actually do it. It was a series of events that helped get me there—my friends changed and I went from being a soccer player to being a theater kid. It was 1996, the kids in theater were gay and coming out. Rent was on Broadway, and I was finally with my tribe of people that were totally 100% into being different. And for the first time I thought, it’s cool that I look like this. Then it took me two years to gain the courage, and I remember someone referred to this period as “the I have to’s instead of I can’t.” But then, once I did, it was divine intervention, and I had to deal with myself.

I didn’t accept myself as a bald person even when I stopped wearing a wig. In my twenties, every time a relationship didn’t work out, I cried and thought, no man wants to date a bald woman, and thought all of these stupid ideas. And then my inner-narrative became, I’m not good enough to be an artist. Finally I let go of that fear ten years ago and became a director. My life has been a process of letting go of old ideas about myself so new ideas can seep in.

So much of my struggle of letting go and wearing a wig was I was afraid of how it was going to make other people feel. I spent so many years trying to make everyone more comfortable with how I looked, and totally abandoned myself in the process.

No one feels comfortable around an uncomfortable person. People lately say, “You look so good,” and I think, I feel good. I haven’t done anything different, I haven’t lost weight. Being a bald woman in 2019 still means that I hear, “You’re so brave,” a lot. I want to say, “I’m not brave. I had to stop wearing that wig—It was like life or death.” If you’re a certain way, and you’re hiding that way, at a certain point, you have to stop hiding, or it’s going to kill you.

I try in all of my creative work to show and celebrate my identity. My first film was a documentary about this couple who has been in a long-distance relationship for forty years. I love love, I love love stories and I love romance, and I love these people because they are showing us a new way of being. I like celebrating a new, different way of being in the world.

My second film is about gefilte fish! My Jewish identity is really important to me. I’m really into the metaphor of gefilte fish, which is, we don’t love that fish, but we love to bring back the memories of our life, and we like to remember the people we’ve lost, and we’ve liked to hold up tradition—it gives you a sense of home—because it’s about love. That film really felt like it was from my heart and soul.

And the film I’m working on now is my first narrative feature. I wrote a script about a girl named Roxy who has Alopecia—It’s called Roxy and Lenore Love You. Roxy has just lost all of her hair, which is different than from my story because I never had hair. The film is fiction, and I was able to write about all of my feelings by creating a world that was not the world I came from, but was also the world I came from. So Roxy is sixteen and she has Alopecia, and her Grandmother, Lenore, has just lost her husband, and her mother, Deborah, is losing her mind. So it’s about three women verses the beauty myth.

I have a true theory that everyone has Alopecia.

Every time I talk about my story in graphic detail, people say that they get it, and they feel it, too. So what I want to say to the next generation is, if you’ve got it, flaunt it. Celebrate what makes you unique, and do it as loudly as you possibly can. My greatest gift is Alopecia. It was my worst nightmare, my greatest enemy, and it has been my greatest spiritual teacher.

If someone said I could grow hair tomorrow, I used to say that I would, and now I don’t think so.

Rachel Fleit is a filmmaker, writer and director living in Brooklyn, New York.

Editor's note: interview conducted on May 10, 2019 and edited for length and clarity.

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