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by Ben Li

I’m 27. My hair fell out when I was one (I don’t remember this). I began wearing a hat in preschool and I didn’t take it off in public for the next 15 years.  

The emotional effects of wearing a hat all that time will forever be with me, just part of the fabric of who I am. But it was not easy, and sometimes still, is not easy. But that’s ok.  

Growing up I was somewhat social, and played all kinds of sports, especially soccer for which there was extensive travel (and success). Through all that I wore a bandana. Superficially, it was a normal childhood. 

From third grade through the end of high school I wore the same hat – not literally, but the same design. Kansas City Royals. Size 7 3/8. When it got too dirty (and smelly) I bought a new one. It was me. I was it. 

I feared it coming off. A few curious classmates had me realize that fear, which drove me deeper into the emotional shell I couldn’t climb out of. 

I thought about it, though. Going to school without my hat. What would my friends say, how would people look at me, how would I react to their reactions? The possibilities were endless, and they were too much for me to bear. So I never opened that door.

When I was a freshman, I began to realize how different I looked without eyebrows. Other people had their heads shaved, but they all had eyebrows. So I began painting them on. Too thick and too dark at first, but eventually I convinced myself that they looked pretty natural. This lead to many adventures in trying not to mess them up throughout the day, because then what would happen? I carried around an extra pencil just in case. 

College came around and I bolted, escapism to the West coast. I didn’t take my hat, and I didn’t take my eyebrow pencil. But I didn’t know myself. I didn’t know that person in the mirror. And I had a hard time getting used to him, me, and it hurt. I was 19, just getting to know myself. 

The end of my sophomore year, some hair began to sprout where my eyebrows weren’t. It was sparse and odd looking so I kept shaving them off, and each time they grew back thicker and more defined. After a few months, I had eyebrows. I still have them, and they do provide me confidence. But they aren’t who I am. If I lose them in the next 30 minutes or 30 years, so be it. 

When I was little my family attended a few NAAF conferences. San Francisco, D.C., Minneapolis. It was a good time, and downright scary. It was easier for me to turn my back and pretend I didn’t have alopecia. I denied the community, and myself. 

What is important now is that I realize the value of the alopecia community. We’re in this together, and we can be strong. But we don’t have to be. We can cry as much as we can laugh, be sad as much as happy. It’s part of being human, and just as well, because our family and friends will love us the same. 

It is my sincere hope that everyone, especially the kids growing up with alopecia, can be proud of who they are. 

Ben Li


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