Thursday, September 5, 2013

The Weight of Alopecia Areata

September is Alopecia Areata Awareness Month, and the Baltimore Orioles have teamed up with the National Alopecia Areata Foundation to support the advocacy, awareness, and medical research work being done for this auto-immune disease. Discount tickets are available to Friday's game, with a portion of each sale going back to NAAF. Click here for ticket information.

When Seconda first lost her hair at age two, and well into her third and fourth years of life, people would stop us on the street or in the Mall. "God bless you," they would say. Some would hug me. Some would squeeze my arm in gentle sympathy.

I guess it's really something to see a bald toddler in a stroller. 

I was so uncomfortable. They thought Seconda was sick with cancer, but in truth she was just bald. Allergic to her hair, as she would say. 

People would occasionally pay for our dinners at restaurants, a practice we have since adopted for any table seeming to need a random act of kindness. One time, we got a letter along with our meal:

This is lovely. We should all be so generously loving to our fellow human beings. Total strangers sharing that kind of warmth is a gift. Yet this letter made me as uncomfortable as the hugs and blessings.

The attention waned as Seconda aged. She was walking and talking (and talking and talking) and didn't at all seem sick. People still stared, alright, but maybe they thought they just don't know why she was bald and decided not to give it more thought. Or maybe not. 

Seconda's alopecia areata had been on the back-burner for so long, it was like I had almost forgotten her hair loss was an unusual thing. She became well-established in school and summer camp and swim team and karate, so I didn't really have to prepare those environments for her like I did when she was new. I had no reason to expect it to be an issue again.

Perhaps that's why it is an issue. She heard more comments from other kids this summer that, while not exactly teasing, didn't make Seconda feel good. I noticed more staring-folks out and about. That's the bad side. The good side is we had a resurgence of people offering her gifts, like the worry stone peddler at the Provincetown art show and the game operator on the Howard County Fair midway. These loving people just can't help themselves from giving this child a bit of joy because they assume her life is lacking typical childhood happiness. 

This is where I feel the weight of alopecia. We have worked to treat her alopecia as no big deal, as no bigger a difference than red hair or green eyes or left-handedness. These gifts from strangers remind us of Seconda's difference, of how much she stands out. That reminder stings, even as the love is felt and appreciated. Sometimes, I just wish people could let her blend in like everyone else. Just don't notice us any more than you notice other unfamiliar families at the art show or fair or restaurant. But if you do notice Seconda, I wish you would really see the real her, not the version you assume her to be.

That is a point made by the fantastic people at the This is Me Foundation.

"You're appearance doesn't make you who you are, it simply covers it up."

Which brings me back to that letter. Maybe the writer did see the real Seconda - a "real life angel" here to remind us that how we look on the outside isn't what is important about us.

For families of children with alopecia areata who are local to central Maryland and Northern Virginia, there is a chapter of the Children's Alopecia Project that meets around here. Check out their Facebook page for more info.

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