eleven years and counting
Greetings! This is a scheduled post because I’ve been away all week at a very special place, doing a very special thing. This is my eleventh consecutive summer volunteering at an overnight camp put on by the American Academy of Dermatology. It’s a week long camp specifically for children with chronic skin conditions and there’s no place like it on earth. Well actually there are several different locations around the globe now but the point is, there’s no place like it for kids (and kids like me) to go where they feel completely “normal” and most like themselves.
How did I get involved in something like this? Well I was born with a rare skin condition called Lamellar Ichthyosis and I had the pleasure of attending this same camp as a kid. It wasn’t until I went back as an adult that I truly realized the impact it has, and the difference it makes, in the lives of the children (and adults!) that get to attend. It has done wonders for my confidence and self worth, and I’m honored to be asked back every summer to help out.
Camp is really like my safe place where people truly know me (as cheesy as that sounds). It doesn’t matter how dry, cracked, scaly, or flared up my skin looks, or whether I wear wigs or not. (For the record: Ichthyosis affects all of my skin, but on a good day my hands still look like they belong on a 90 year old lizard – No offense to those with dry skin conditions, or elderly reptiles, I just try to make light of the things in my life that kinda suck sometimes. My humor is my defense mechanism).
When you look at my photos here you’d probably never guess there was anything different about me, and that’s because modern medicine is a marvelous thing. Plus I don’t like taking close-ups of my hands, or any photos at all when my skin is flared up. Not really because of the way it looks, but because it’s extremely uncomfortable and can be quite painful to do ANYTHING during those times, let alone put on makeup, wear clothing other than pajamas, and try to stop scratching long enough to take a photo. It’s just what I deal with and I deal with it quite well. It could be better, it could be worse, it’s whatever. It’s part of who I am.
I don’t have pretty hands, but they make pretty things and I’m quite proud of that.
It’s nice though to not have to put up a guard or put on a brave face for one whole week out of the year. For this week I get to be totally free among my peers. …and also among dermatologists which is awesome because they understand the need to stay hydrated, slathered in fragrance-free moisturizer, and covered in SPF 1000 at all times. We have a lot of fun (no sarcasm there).
But you know what? The sewing community has become my safe zone for the other 51 weeks of the year outside of camp. I feel welcome here and my blog is a place where I can express the best version of myself in a way that makes me feel accepted and empowered. It’s pretty awesome and I have you all to thank for that. So thank you <3
I’m sure some of you out there have similar circumstances in your lives that make you feel exactly like I do. If you’re comfortable sharing, I’d love to hear how the sewing community (or some other community) has made you feel welcomed and loved.
It’s nice to talk about that stuff sometimes.