Unable to focus now with Persephone orbiting in my head (what, exactly, was Josh saying to me and the rest of the world?), yet unwilling to have my heart recrack with false hope, I decide to do what I have always done best: research. There may not be many people on the planet with solar urticaria, but 1.5 million people in the US alone have lupus. So I get online on my UPF-covered Mac care of Aminta and Caresse, and within a minute, I find what I’m looking for: a chat room for people with lupus. Even better, there’s an entire forum dedicated to managing photosensitivity.

Luluboo (new member): Can we just ask questions about how to deal with the sun and see what other ppl are going thru and see their answers so I don’t feel so alone?

That single question makes me feel less lonely, especially when at least fifteen other members immediately welcomed Luluboo and reassured her that this is a safe spot. Below that, the questions and stories begin, interspersed with introductions of new members. There’s Denali, who shares how she’s had to stay inside for three straight months when the summer never set in Alaska and is now afraid to venture outside, wondering whether it’s worth the risk. Then TheVault, who chimes in about how even sun-protective clothes aren’t completely sun-blocking, how she got badly burned, how her body flared and ached for weeks afterward.

It’s depressing, all these stories, all my whispers of “me, too.” That is, until I scroll way down and get cyber-slapped in the face by a poufy-haired, silver-haloed grandmother.

Nana1947: Yes, stay inside. Don’t dare a flare. I understand that. I locked myself inside for the first ten years after my diagnosis, so worried that I’d be in pain.

Yet there’s smelling the first bloom of jasmine. Walking around the block with your dying husband. Throwing a ball with your daughter. Watching your grandson graduate from college. The cost of going out is high, but the cost of locking out life is much, much higher.

You can guess the price I choose to pay for those precious moments when my body feels up to it. Invariably, my body shuts down afterward, recovering is taking me longer and longer. For me, living is worth it. The only answer that really matters, though, is yours: Are you staying inside because you absolutely must or are you hiding inside because you’re afraid to take a chance outside?

…

I rear away from the screen, as scalded with the truth as most of the responders. I haven’t been running scared; I have encased myself in fear, the same as Josh. A few haters talk about how their condition was so much worse than Nana1947 and how dare she assume that everyone is staying inside because they’re afraid. To which my new nana-hero responded with one line: There is still starlight.