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Facing Discrimination With an Invisible Illness

I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the direct admission orders from my hematologist allowed me to bypass the…

How I Vacation With Acute Hepatic Porphyria

I refreshed the Lyft app on my phone as the speakers behind me blared music from the beloved animated classics of my childhood. I eased my body onto a relatively dry strip of concrete and continued my day of waiting. That morning in February 2020 started earlier than my body…

Why I Won’t Quit Wearing a Mask

Waiting in the center aisle of the plane wearing a brown backpack and a blue surgical mask, I felt the eyes of strangers on me. It was February 2020, and my family was boarding an early morning flight to Orlando, on our way to Disney World for a little winter…

I Have Acute Porphyria, and I Am Ticked Off

Kicking off my shoes, I turned my chin up to the top of the hill, where the grassy crest met the garden and the sky beyond. I looked to my right, where one of my dearest friends Jennifer had mimicked my actions and slipped out of flip-flops. Amid the blowing…

The Symptom-tracking Method That Actually Works for Me

Deep in the dark recesses of my bottom filing cabinet drawer is a collection of hard-bound, brightly colored planners from years past. Each agenda represents a year in my life — 365 days of to-do lists, Little League games, project deadlines, doctors’ appointments, birthdays, book clubs, coffee dates, meetings, and…