rare diseases

Naming It

It’s been a long, messy process, but I’ve finally learned to read some of my own cues. When something is bothering me, for instance, I tend to consume food and drink straight from the container. The quantities aren’t excessive, but it’s definitely not normal.

So when, in December of 2013, I found myself leaning against the kitchen sink and staring at a blank wall, a bag of chip crumbs in one hand and a nearly-empty bottle of pinot noir from the previous week in the other, I was surprised.

What was there to be upset about? We had just gotten Collin’s diagnosis. The one we had been pursuing for almost five years. Hooray. Right?