Columns

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…

I bore down on the pedals as the pavement rose to meet me. Ahead, the tree-lined trail continued at a slow incline, swelling gradually as I glided uphill. With the push of a button, my pedaling took me farther. With the flip of a switch, I could be carried up…

I stacked a cling-wrapped tray of broccoli trees on top of half a dozen brats, then shoved them to the side of the middle shelf, revealing two blocks of tofu, a slightly wilting head of cabbage, and a storage container holding segments of an onion. Returning from the grocery store,…

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…

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…

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…

At 16, I drove my 1992 Honda Accord to my biannual rheumatology appointment. In the lobby, I waited among older patients, who were accompanied by their middle-aged spouses or adult children. Flipping through a three-month-old issue of Reader’s Digest, I felt mildly self-conscious about my nonorthopedic sneakers and cranberry-colored spiky…

My mind adjusted as my eyes took in my bedroom, with the shades drawn and the morning light pushing through. After a week in the hospital, I’d grown accustomed to the tubing snaking out of my chest, the guardrails of my bed, and the periodic beeping of my pumps. At…

I opened my eyes after a long midday nap. Above my head, the off-white ceiling tiles of my hospital room were textured squares. I traced patterns with my eyes, linking diagonals on an imaginary tic-tac-toe game. Sleep was my weapon of last resort against a relentless migraine that had me…

Four years ago, I was diagnosed with acute hepatic porphyria (AHP), and it’s complicated. It’s a liver disease affecting my blood; it’s also an inherited metabolic disorder with neurovisceral effects. I’m still figuring out how to dumb down the mechanics. For this column, let’s skip the medical jargon. Porphyria…