“You look like Medusa in the morning.” My husband lovingly remarked, early in our relationship.

I smiled.

Perhaps that was the moment I began to like my extremely curly hair a little more. Waking up and looking in the mirror had always been an exercise in self-restraint. The impulse was to run screaming from the bathroom at the image of a short, pudgy, girl with frizzy, matted hair, and curls, resembling the Gorgon of Greek mythology.

This movement towards a modicum of acceptance was a long time in coming.

I hit the genetic lottery. Curly hair can be found on both sides of my family, but in an unhappy distinction, I have the curliest hair on both sides. Growing up my mother struggled with how to help me style it. I underwent a series of tortures. As a small child, my mother insisted I sleep with my hair in pin curls to “help” make it more manageable. Then the hairdresser would thin it and it would appear patchy. For years I wore it in pigtails.

“I hate my hair.” I cried coming into the kitchen.

“I just spent over an hour with it wrapped and under the dryer and it is still so frizzy.” I sobbed.

My parents lamely tried to make me feel better. But, in high school, my curly brown hair definitely set me apart from all the blondes with Farrah Fawcett tresses and long straight ponytails.

Then all the attempts to straighten my hair resulted in thinning. When my scalp became visible, my hairdresser cut it short and I was forced to wear it curly. In an era when individuality was not rewarded, at a time in life when you desperately want to fit in, I did not. Moreover, if I showered at night, I had to “water” my head in the morning. Like caring for a Bonzi bush, I would spritz the curls and tend to them to bring them back to life. It was a lot of work.

Gradually curly hair became more hip and anti-frizz products became more available, but at the same time blow-dry bars started to pop up.

“Ellen, I love your hair blown out.” My mother-in-law crowed. “Why don’t you wear it like that all the time?”

“I have curly hair.” I retorted. “It’s very expensive to get a weekly blow-dry.”

I might not like my curly hair but I’d be damned, if I was going to agree with my mother-in-law.

This summer I developed a rash on my scalp. I quickly found that it was easier for the dermatologist to see what was happening when my hair was straight. Disgusted that at 61 I hadn’t learned to do it myself I unearthed my

Revlon Hot Air Brush, found a YouTube video, and for the first time ever blew dry my own hair.

“Ellen, your hair looks great.”

“Thanks. I did it myself.” I preened.

Unfortunately, the rash continued into the fall and the doctor took a biopsy.

“The biopsy results show that you have lichen planopilaris, a rare form of scarring alopecia. It’s an autoimmune disease.”

My first thought was isn’t that ironic. It took me 61 years to figure out how to blow dry my curly hair and now that I have, I’m pretty sure I shouldn’t for a while. The second thought was, there’s nothing like a good chance of losing what you’ve got to appreciate what you have. I realized I have grown to love my curls. They’re distinctive.

Curls and colorful glasses are a couple of the ways I choose to define myself.

This disease is rare enough that many of the treatments are somewhat experimental and individualized depending on your doctor. But there are treatments and for now my hair continues to be curly enough that most people, not looking carefully, can’t tell the difference. And if I ever have to wear a wig, I’m going to experiment with color and style. But I will definitely get a curly one.

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