"One Thousand Flaming Swords" – a Column by Claire Richmond

Last weekend, we barricaded our street and placed tables with chairs along the curb. The distant smell of hot dogs grilling filled the air as we staked little ghost decorations along the edge of a slope in the front yard, creating a border for a stage. Once the yard games…

My favorite room in our home is the three-seasons front porch. It overlooks the west side of our house, where, this summer, we planted a pollinator garden. Nine months out of the year, this is where you’ll find me writing, meditating, or reading. Lenny will perch on the…

On a sunny day last week, I was grateful for the energy to be able to enjoy an early autumn evening in the backyard. My partner sat in the patio swing and the kids ran around in the grass. I wandered over to our small vegetable patch, where tomato plants…

I’ve heard people describe living with a chronic illness like acute hepatic porphyria (AHP) as a full-time job. But it requires much more than 40 hours a week, Monday through Friday. Between medication schedules, doctor appointments, insurance issues, advocacy work, and the healthy behaviors to prevent flare-ups or…

I was once in the hospital during the holiday season. At that time, I could only receive Panhematin infusions for an acute porphyria attack as an inpatient. I plugged my grandma’s ceramic, tabletop tree in next to the bedside, where its rainbow of colored lights shone brightly. I…

The day of my diagnosis was the first glimpse into my resiliency and willpower. That morning, my doctor called with test results indicating acute hepatic porphyria (AHP). Anger, sadness, fear, and wonder all came crashing into me, knocking me sideways and then completely out of my body. Suspended…

When it comes to chronic illness, I’ve often wondered if living by limited boundaries and conserving energy would prevent my lowest lows. I appreciate how the spoon theory, a popular analogy in the chronic illness community about conserving mental and physical energy, simplifies energetic deficits for people who don’t…

The last thing I remembered was screaming out for him as he turned his back to me and vanished. Then, suddenly, I was alone on my couch with clenched fists. Blinking, I looked around, taking in the flashing screen saver of my television and the small puddle of drool on…

Note: This column describes the author’s own experiences with Givlaari. Not everybody will have the same response to treatment. Consult your doctor before starting or stopping any therapy. I used to believe in a wonder drug for my rare disease. And I wasn’t alone in telling myself I’d be…

Intentional or not, most of my writing happens in bed. It’s where I reflect on my day, journal my meditations, feel inspired by the words of others, and dissect my dreams. The world begins in my bed. Adorned with luxury cotton sheets and supportive pillows, it’s where I rest. On…