Bare Soul

This is what I looked like last week:

And this is what I might look like in six months:

Photo from the National Alopecia Areata Foundation

Yesterday morning I found a bald patch at the nape of my neck, about the size of my thumb.

My alopecia areata is back. There’s no mistaking it; the shape of the patch, the smooth, pink skin.

Let’s backtrack a bit.

***

Six months before my wedding I was pulling my hair back while getting ready for work when I found a bald patch behind my right ear.

I did what any woman would do – panicked and thought I was dying. Turns out I wasn’t dying, but my body had flipped a switch and turned on the AA gene lurking inside my DNA.

The disease affects about .01 percent of the population in North America, and what happens is that, suddenly, my body senses my hair as a foreign substance and kills it off. The follicles get inflamed and the hair dies at the root, causing baldness.

Usually it is limited to small patches, but in extreme rare cases, you can lose all of the hair on your head (alopecia totalis), or even develop universalis, which is when you lose all your body hair – lashes, brows, pubic hair, the works.

Me?

You know you can guess how far my case went.

I lost 98 percent of the hair on my head.

***

It was a very gradual process at first. The patch behind my ear grew to an alarming size, and then I was frightened enough to seek treatment (my old GP told me not to bother, that the disease would run its course without further damage) from a dermatologist, the specialist that deals with AA.

For months I received hundreds of painful cortisone injections in my head, bleeding and crying as more and more clumps of hair fell to the floor while my gentle and equally distraught doctor tried in vain to help stem the tide.

It didn’t work.

Late one very cold January evening, my husband and I sat in our bathroom while he shaved my head with devastating gentleness.

I will never forget the moment of looking at myself in the mirror. Really looking.

I traveled to Brooklyn, to a famous wigmaker that caters to Orthodox Jewish women whose religious traditions require them to cover their hair in public once they are wed.

The hair was so beautiful, so thick and silky, even more lovely than my own. I remember impulsively asking the woman who cut the hairpiece to resemble my former hairstyle if I could hug her.

“You have no idea how happy this makes me,” I told her, as my mother slipped her an enormous tip.

And it did, really. My wig was gorgeous. But it was also uncomfortable; hot and itchy, the wig tape pulling and tweaking the last remaining stubborn hairs at the top of my head.

Finally, I started going without it on weekends, wearing a ball cap or scarf to keep my pate warm.

***

I’ve always had lovely hair.

I can say that now, I can talk openly about a feature I possess that is beautiful. Everyone always told me so – my parents, my hairdressers, my husband. In grade school girls would jostle to sit behind me in library, so they could braid it over and over.

Thick, deep brown and straight as a pin, it was my crowning glory on my wedding day, setting off to perfection the delicate tiara I chose as my only adornment.

The loss of it, nay, the slow and painful destruction of the one single thing that made me feel beautiful, was so heartbreaking.

This society is not kind to those who are different, and my baldness was a signal for staring and whispered comments, accompanied by rude questions regarding the state of my health.

Everyone thought I had cancer, and it made me furious. It was an insult to people who were sick – like my father, looking hale and hearty while we all knew the tumor inside him was killing him. My father, who went to his grave convinced that I was bald because of him, because of the stress of his illness.

Because the triggers, you see, are mainly stress related.

Not to mention the guilt I felt when, every time, I had to explain that no, I wasn’t ill, I just had AA.

Just.

As if I should feel fine about it, like, hey! I’m fine! Great! Peachy! Being a 31-year-old woman who is almost completely bald is a blast! No big whoop!

I felt – and still feel – that I have no right to feel bad about this, this purely superficial disease that has no other health effects.

But I do. I feel really, really sad.

***

After I found the patch, I called Mr. C at his office and told him about it, tears just a word away. I told him I was coming to see him as soon as our sitter arrived.

When I finally got to him, the floodgates opened and he held me close.

“I can’t do this again! I don’t want to! I thought I was done!” I sobbed, inconsolable. “I don’t want to live here without my support system and be bald! I don’t want to be the bald mom at preschool!”

He sat me on the couch and hugged me tight until I was spent.

The immediate storm had ended. He took my hand and looked me in the eye.

“You don’t know if it will be that bad again,” he said, reminding me of the statistics and the unpredictable nature of the disease. “And if you have to, you can. You know how to deal with this.”

It couldn’t change the important stuff, he said – the love between me and him, or the love between me and The Poo.

It would be OK, no matter what the outcome. I would be OK.

***

Ironically, I’ve been thinking about AA a lot lately, and that time in my life. I recently even left a comment on Y’s “Random Fact” contest post about it.

Then, just yesterday, I was telling my new and very, very terrible stylist how I got my current haircut because I made a vow when I went bald that I would never again take my hair for granted and that I would try new styles if and when it ever grew back.

I feel like I’ve been tempting fate.

This morning I was inspecting the back of the horrendous haircut she gave me when I discovered that my disease had recurred.

I suppose I should look on the bright side. Growing out these dumbass bangs would take a year – if my AA runs the same course that it did the last time, I’ll be almost completely bald in six months.

I guess that’s one way to get rid of a bad haircut.