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…
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 zinnia seedlings grow on a sunny windowsill in my dining room.
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 it all the way to sleep. My feet were uncomfortably warm…
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 as if discomfort and fatigue haven’t colonized in my body. Every…
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 modeled all the behaviors of a great friend throughout my life,…
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 approved, after health advocacy groups had called for policies to…
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