Today, I was up in Livermore hanging out with my friend S and her girls at Camp Wonder. I saw some familiar faces from last year, but overall, S’s group was noticeably more chill than her groups from previous years. Perhaps it was the older ages (9+)? Or simply different personalities? I don’t interact with kids enough to really know. Regardless, I was thrilled to see several of the kids playing with my headband and bracelet-making kits, even proudly wearing their creations afterwards. Those kits, man. Can the instructions be any more confusing? For reals.

It was great to catch up with S. She’s had an extremely difficult year, getting kicked off her insurance and then having to go off her meds. Compared to last year, her arms and legs were covered in scales, and she said the chronic pain got really bad the last several months. It was so upsetting hearing her describe firsthand our broken healthcare system: Medi-cal refused to cover the meds she needed: to make matters worse, the program administrators insisted that she go through various courses of cheaper meds first– meds that she’d already tried in the past and that had proven ineffective (some with extremely damaging chemotherapy side effects)– before giving her the known working meds. So despite her extensive medical records and documentation, with physicians already having tried the cheaper drugs, the program made her jump through the hoops all over again! And during this time, of course her condition and pain escalated. Argh, so incredibly frustrating that she was forced to endure even though a helpful treatment had already been identified!! WTF?!?!

I was really glad to visit my friend and her girls, but on the drive home, I felt really sad. Seeing all the kids with such severe, disfiguring, and debilitating skin diseases… It reminded me of all the pain and shame and embarrassment I had felt when I had severe cystic acne. And no matter how badly I had it back then, my case was just superficial shit. These kids’ diseases are on an entirely different level. Some of them have skin so sensitive, it has to be bandaged and dressed multiple times a day– their arms and legs completely wrapped and covered. The skin that is exposed– it’s splotchy, lesioned, and discolored. Some have lost their hair. And as if that weren’t enough, they are in chronic pain, with arthritis and blisters and organ issues. Some kids don’t have fingernails much less fingers. It brings tears to my eyes thinking about how much they suffer. And they are just kids. How do they still find joy in each and every day? How do they find the strength to laugh and play and smile through the overwhelming discomfort and pain? And then I think about the families who provide for these precious little hearts. Honestly, where do they find the courage and stamina?

I am reminded again today of my many blessings. And I’m grateful for the kind souls behind Camp Wonder and the Childrens’ Skin Disease Foundation (created by a fellow Dukie, btw!). I am humbled by their purpose and commitment. And the kids… I am inspired by their sweet smiles.