Tuesday, August 12, 2014

Just be nice

I wrote this partial blog entry about two months ago. Then I sat on it. I'm not sure why. Part of the reason for hiding it was simply because it's a bit disjointed and I don't like to publish blog entries that are not terribly cohesive. The greater reason for my hesitation is probably my deep discomfort in discussing my medical issues. I can't say that I dig it when someone looks at me for just a beat too long and then I know that they know. And there is judgement there. Anyway, I had come across two similar articles in a short span of time so I felt prompted to write about the articles, my medical issues, and mean people - all in one fell swoop.  The effect/outcome is less than heroic, so I apologize for that.

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I recently attended a house concert, which was a lot of fun. I don't know if this is a growing movement among not-quite-famous musicians (playing in a residence for anyone who'd like to come), but I've heard of quite a few doing it.  I recently discovered a singer named Sean Rowe and he seems to perform a lot of house shows. Anyway, the singer I heard was Kristen Graves.  She lives in Connecticut and mostly tours that neck of the woods but if you ever get a chance to see her, please do. She's wonderful. I found out about her through my friend Sarah (who hosted the concert) and now that I've seen Kristen live, I can see why my friend enjoys her work so much. She's absolutely wonderful and uses her life to do good things.  She started a faux political party called "Just be nice!" and hands out little buttons printed with this slogan. I have mine pinned to the sun visor in my car. It's a good little reminder to me not to be so cynical all the time.  I envy the naturally sunny people, I truly do.

We've all encountered people who don't know how to be nice, of course.  Warning: bad segue ahead. When I was a young child, I was diagnosed with vitiligo. If I have a book inside me somewhere, growing up with vitiligo (and some other fun medical stuff awarded to me by my DNA) would be the topic.  I cannot begin to describe all the ways in which this stupid disorder has made my life so much harder than it has to be.  When I was diagnosed, back in the 70s, there weren't many treatment options. My parents didn't know that they were supposed to keep me out of the sun. Sunblock wasn't readily available like it is now. In fact, when I was growing up, everyone wanted to be as tan as they could get. Remember all the brown people in the Coppertone ads? Cancer schmancer, I guess.  Anyway, my condition got worse over the years - a lot worse.  I remember some of the treatments: take this pill and sit in the sun, for example. Nothing worked.  I had unpigmented patches of skin all over my body and the contrast was very, very noticeable. People stared.  I used to walk with my palms turned outward (which is awkward - try it and see) so that people would not look at the mottled skin on my hands.

School was nightmarish but as much as kids were sometimes cruel, the worst treatment I received was from adults. By far. I remember being asked fairly regularly (always by adults) if I'd been in a fire. A crazy lady at KMart once asked me if maybe I'd worn too-small shoes and caused the white patches on my legs from that. Yes, me and my freakishly tight shoes - I brought it on myself. A cashier at Hallmark made an insulting remark about my skin color (I don't remember what it was specifically, just that it was hurtful). Honestly, I've probably suppressed a lot of what happened to me, but I distinctly remember the stares.   I recently heard a StoryCorps podcast about a father and daughter who both have vitiligo. She explained how she has dealt with the staring (click the link below - it's pretty funny). I wish I had half this young woman's confidence!

When I was fourteen, I entered a two-year depigmentation procedure under the care of a dermatologist.  By the time I was sixteen, my skin was one color - which is to say, no color at all. It's not something most people would choose, but for me it was better than the alternative. It still is. Sometimes I even get compliments. Not long ago I was in a public garden with my daughter and a lady said, "What a beautiful complexion you have." I have noticed that I pretty much only get compliments from old ladies, but I'll take what I can get, I guess.

As for my childhood, I can't go back in time and dish out snappy comebacks. I can't pretend my (fair) skin is thicker now than it was then (it's not).  All I can really do is try to raise a human being who is nicer than some of the ones I encountered when I was young.  If I impart nothing else to my daughter in her life, I will settle for teaching her to "just be nice." Don't stare. Don't say goofy shit to other people. Just be nice. Just. Be. Nice.

Here are the vitiligo-related articles I referenced: 

http://www.cnn.com/2014/06/25/health/vitiligo-skin-disease/index.html?hpt=hp_t2

http://storycorps.org/listen/cheri-lindsay-and-phillip-lindsay/

1 comment:

Sam said...

That must have been so hard growing up. In pictures it really does look as though you have beautiful skin now, but I can only imagine how hard it was before the treatment.

Beautiful post! And good reminder to just be nice.