One Thousand Flaming Swords — Claire Richmond

My brother, Jake, has acute intermittent porphyria (AIP). But he’s in denial. “Doesn’t everyone’s stomach hurt when they miss a meal?” he asked me one day over the phone. No. Another time he admitted feeling frequent bouts of nausea. “It’s the worst at night. I always thought it was…

My urine turns a reddish shade of purple when I’m sick. It resembles pomegranate juice, lightly staining the toilet bowl with a ring of fuchsia. This is a symptom unique to acute intermittent porphyria (AIP). The word “porphyria” is even derived from the ancient Greek word…

A few weeks ago, I received Panhematin (hemin for injection) at the infusion center for treatment of my acute hepatic porphyria (AHP), then drove straight to a protest at the Iowa State Capitol in Des Moines. I hooked a rainbow tie-dye face mask behind my ears and…

John Manak, PhD, a professor and human genetics disease expert at the University of Iowa, emailed me to ask if I’d speak to his class about living with acute intermittent porphyria (AIP). The class was called “Good Genes Gone Bad.” Little did I know at the time how much…

My dog, Lenny, walked alongside me in his red vest, adeptly navigating the display tables heaped with candies. At our neighborhood chocolatier, glistening pink wrappers and crimson hearts had replaced clearanced holiday treats. When we came to the glass case, Lenny patiently settled on his belly while I peered…

I tucked my head against a gust of winter, and followed my partner, Michael, toward a brightly lit bakery teeming with strudel, croissants, and Dutch letters. Inside, I pointed at cookies under a glass case and watched as a woman in an apron delicately placed my selections into a white…

I stood in front of the bathroom mirror long enough to see the pair of eyes peering back at me, and they looked exhausted. After nearly two weeks in the hospital with horrific pain, a paralyzed digestive tract, and mysterious autonomic dysfunction, my body was deflated. Translucent…

I’d like to give a shout out to everyone who prioritized nourishing their bodies and minds in 2023. Whatever that might look like for each one of us, let’s all hold our heads high. In the last couple years, the severity of my acute hepatic porphyria (AHP) and related…

I walked across the Court Avenue bridge into downtown Des Moines, Iowa, accompanied by Michael, my spouse. We were greeted by smells of fresh coffee and breakfast sandwiches. It was late October and one of the last outdoor farmers markets of the year. I bought an apple cider in a…

I thought I might never get over the loss I felt upon learning I had acute hepatic porphyria. In my early 30s, I lost my job, my ability to do traditional full-time work, and my medical coverage, and I couldn’t find an in-state provider to take my case. The…

Every October, the Midwest Alliance for Mindfulness (MAM) hosts a silent retreat in the woods outside of Kansas City, Missouri. For five days, I volunteered not to speak. I knew it would be difficult, but nothing prepared me for what would actually happen. We arrived on Sunday afternoon to…