Photo credit: Camera RAW photography

How did writing this book change you?

I started to drink coffee and booze for the first time in my adult life during the writing of this book. There isn’t a direct correlation—the book didn’t drive me to drink—but it feels connected. I’m a bit embarrassed to admit I never regularly drank coffee or alcohol until I was 45—an age when many friends are cutting back on both—but it’s true. I started when my husband and I were separated for six months in 2013, and I was feeling a little reckless, a little wild. Part of the reason I hadn’t imbibed for most of my adult life is that for many years, I thought I had acute intermittent porphyria, a genetic metabolic disorder with a long list of contraindications, including alcohol, and my mother, who was working on a documentary about porphyria and Ehlers-Danlos syndrome at the time of her death (a documentary named The Art of Misdiagnosis, whose title I stole for my memoir, a documentary I transcribed and wove in to my memoir) had me convinced a glass of wine could kill me. Coffee isn’t on the forbidden list for porphyria, but when my first cup in college made me feel as if my bones were going to shoot out of my skin, I took this to mean I was too sensitive to enjoy caffeine. I believed this for decades. I had come to see myself as a fragile flower—a label I once took great pains to paste to myself, a label I’ve found challenging but satisfying to peel away. I still don’t consume much of either, but drinking coffee and the occasional glass of wine has helped me see myself as an adult, helped me realize I am far more sturdy than I had imagined. Writing this memoir did the same.

Thirty-seven weeks pregnant and I can’t seem to stop crying. This is unusual for me. I tend to be an optimistic person. Relentlessly so. Probably obnoxiously so. I tend to be not just a glass-half-full kind of person, but a person who may just point out that the rest of the glass is filled with sunlight; an everything’s-going-to-be-okay, go-with-the-flow, isn’t-life-amazing type of person—in the world, at least, if not always in my own head.

Part of the reason my first marriage fell apart two years ago was because I didn’t know how to let my husband know when I was upset. I spent way too much time smiling when I should have been honest with him. I kept so much frustration and anger pent up inside, so many silent things accumulating until they turned toxic under my skin. I’ve told myself I won’t make the same mistake with my new marriage, and it appears my body is holding me to that, at least for now. My habitual smile is starting to fracture; whatever has been hiding behind it is seeping out.