The other day, I was going through my photo stash on my computer. I’m sure I’m not the only one who suddenly realizes, I have thousands of photos on my phone, I should do something about that, and then goes on a deleting/organizing spree.

As I as going through them I found a lot of older photos of me, obviously. Photos that, at the time, I had hated. Take the photo above. I didn’t like the way I looked in that photo when it was actually taken. This has been a pretty constant thing for me, in all the years post-transplant. I rarely like how I look in photos.

This is because, pre-transplant, I was tiny. My body was actually eating itself to stay alive. I was actively dying in some photos. But damn I looked good in photos. Girls told me that they wanted to be me. I was a size 0 (00 didn’t exist then). I had a skirt from Gap that was an XXXS. That’s right. A triple small.

I weighed around 103 lbs in college. Before transplant, I weighed 85 pounds. I was the size of a middle schooler.

But I looked good in photographs.

Now, going back, I can see that I didn’t. I didn’t have good color, for one. I’ve always been fair, and I still am, but this was sick fair. Consumptive fair, Lucy-being-drained-of-blood-by-Dracula fair.

This is me in college—when I was healthier, when I weighed about 103 pounds or so.

But our culture—and really, it is our culture—is so screwed up that we think that a girl who wears a 00 and is dying is something to be emulated, that this is a “good look”, that this is a good thing.

It is not a good thing. I’m sure some people thought I was anorexic and that I did this on purpose. I didn’t.

CF, for girls, can make you look really “pretty”. You’re thin, for one, so that helps. People think you look good. But it hides the fact that ours bodies are cannibalizing ourselves to stay alive. A CF person needs about 5-6,000 calories a day. I wasn’t getting that. Even on TPN (total parietal nutrition—essentially tube feedings, via an IV that was hooked up while I slept), I wasn’t gaining weight.

But I didn’t mind having my picture taken.

Post-transplant, I mind. I mind a lot. There were maybe a few months where I felt OK about having my photo taken, but generally, over the past 16 years, I try to hide in photos. I don’t like seeing myself in photos.

I’m much healthier now, obviously. I’m not on the brink of death, and that’s not an exaggeration. I have muscles, my body doesn’t try to eat itself to give itself fuel. But there are lots of other issues—not the least is trying to re-learn how to eat after 23 years of “eat whatever you want”—and with diabetes, the fact that you can have to eat things like candy, or drink juice, just to keep your blood glucose happy, is a lot of balls to juggle.

I try not to complain about it. But it’s hard to see myself in photos.

But anyway, as I looked at the photo of Di and Frankie and I (above), I thought. I am glad I got in that picture. I am glad that I have this memory of that moment, of Frankie being that age and Di and I enjoying being together. I am glad that I am in this photo.

Over the weekend, Diane texted me and said that Bridget had found a photo of us, taken when I was on vacation, on her mom’s phone, and that it was “her favorite.”

And I realized, Bridget doesn’t care that I don’t like how I look. What she cares about is that I was in a photo with her. That we have this memory.

This doesn’t mean that I don’t want to be stronger, that I don’t want to be in better shape. (I finished a workout right before I wrote this.) I do.

But so many times we don’t want to be in the picture until we “look better.”

But the important thing is that we make the memories. Because that’s what matters. That we have these things to look at later, and that people have these when we’re not there.

Get in the picture, folks.