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…
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…
Read moreWaiting 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…
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…
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,…
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,…
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…
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…
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…
Earlier this month, I planted rows of seeds. Twice daily, I watered them with a spray bottle. Within five days, bright green, tender stems broke through the earth, unfurling delicate pairs of seed leaves. Now, a tray of…
It was an average, restless morning, when time was meaningless and elusive. With the muted glow of streetlights peeking through the shades, it could’ve just as easily been 1 a.m. as 6 a.m. I wasn’t sure I had made…
Like many with chronic illness, I can function in high pain and with low energy. Living with acute hepatic porphyria (AHP), I’ve grown accustomed to carrying its weight around with me, to showing up in the world…
No matter what, I will always have my girlfriends. Nothing against my incredible soon-to-be husband, Michael, those were simply the sentiments instilled in me by the woman I admire most in the world: my grandma. Now 96, she has…
The rare disease community took some serious hits in 2020. Critical clinical trials were halted and orphan drug funding targeted the development of COVID-19 treatments. As an extra slap in the face, legislation supporting telemedicine was…
Get regular updates to your inbox.