Such a Pretty Face

Got a lovely e-mail from an old high school friend I haven’t seen in years who saw the essay on AOL. In his message he said he always wondered what it was I was dealing with, and that perfectly sums up what can be so hard about living with K-T. I’m definitely NOT suggesting it’s harder or less hard than having, say…an amputated leg or a hair-lip or [fill in the blank], it’s just different. (And by the way, message to certain AOL commenters: Nobody ever wins the game “You Think THAT’S Bad….” so let’s cut it out, huh? Why can’t we all just be compassionate and rad?! Misery one-upping doesn’t seem fun.)

I’m not always sure what people make of me (and I wish I could say who cares, but…give me time!). It’s sort of head-trippy to think that people are looking at you and wondering what’s wrong. Wondering is not necessarily the same as judging, but it can feel that way. One of the things I struggle with is people looking and simply not knowing what it is, not being able to put a name to what I’ve got. Not sure why labels are so important….

Anyway, what do you guys think?

Many of you have sent your e-mail addresses to me and I promise I’m going to try to respond. I’m really touched and flattered that so many of you have shared your stories—it’s just been a very whirlwindy few days!!! xo carla.

I want to clarify, because friends–old and new alike–have been (very kindly) concerned: The term “potentially fatal disorder” has been thrown around a lot out there on the interweb today, and it’s important to say that while K-T (as far as I know) can be fatal in some cases, in mine it is not. (Knocking on wood and anything else within reach.) Nor is it progressive. (Again, this just goes for my case–I’m not an expert on K-T; I am an expert only on my own experience. And first and foremost, I am a writer!) It’s been jarring to read so many condolences about my health today. I am healthy, people! And I am incredibly grateful for this. As I say in my essay, I got off easy.

(*Addendum, one day later: When I talked to my mom today, I even asked her, just to be sure: “Um, Mom, I’m seeing a lot of “progressively worse” and “fatal” out there. What gives? That’s not me, right?” She assured me it’s not, that I had all the tests I guess K-T kids get when they’re little. So I’m learning a lot. Someone commented on the ABCNews.com page that he thought the description of the disease represented in the article was misleading, as he’s spent his entire life in pain. I felt bad about this–I hope it’s clear that I can only represent my own experience. As we can all see from everybody’s very generous sharing on this site over the past few days, everybody’s case is unique.)

That’s all. Just wanted to say I ain’t goin’ anywhere!

Hey, y’all! Thank you to everyone who’s read and commented on my essay “What the Guys I Date Don’t Know,” originally published in the June issue of Marie Claire (that’s the issue with the super-fierce Beyonce on the cover).

It’s been a really interesting day since the essay hit the AOL home page. Lots of people have had amazing things to say, and still more have been extremely generous with sharing their own experiences and hardships.  My story may be unique, but everybody’s got their own equivalent, something they consider “baggage.” In that way, we’re all the same.

Others aren’t as fond of my essay, and that’s ok, too! I love this supa-fabulous exchange of ideas that’s happening right now. Let’s keep it up! What blows my mind are the (very few) people who have taken my essay as an opportunity to attack my physical appearance. To them I say, WTF? Are you kidding me with this?!

Weather’s lovely in Brooklyn, so I’m hoping to get outside soon. I hope there’s sunshine wherever you are, too!

xo carla.