Disease: 5 Vignettes

February, 2026

I make a TikTok of me dancing in Vienna. It is the eve of my birthday, and I’ve never felt prettier. I paid for the whole trip with credit card points, vestiges of the corporate employee I used to be. They upgraded me to a suite, which is sizable, yet filled with strange wire contraptions resembling a skeleton. I hope I never have to get an MRI again.

I am texting with my favorite rapper, and he sends me an array of drool emojis. Now I can die happy! It is just a figure of speech, of course. I am only 36.

I am alone in this corner of the Old World, but filled to the brim with endorphins. For the first time in nearly a year, I permit myself the tiniest glimmer of hope. Maybe every bad thing that’s happened to me has been setting me up for an incredible comeback, a creative career beyond my wildest dreams.

I storm around The City of Dreams in my black leather pants, taking in gilded palaces and Art Nouveau masterpieces. I barely sleep, fueled by jetlag and the adrenaline of a decade’s long crush coming to fruition. There’s an odd sensation of warmth coursing and pooling down my legs for hours, as I lay naked in bed. I make note of it, but I wiggle my toes, and I feel everything as it should be.

I hope it is not happening to me again, what happened in Spain last year.

June, 2025

It is the first time in months that I feel fully healthy, and unafraid to travel again. I am in New York City to celebrate my best friend Dana’s birthday. Everything is joyful, normal. Normal is good.

We go see a weird live action play about Rasputin on Governors Island, and we sprint to catch the ferry and then run around the multiple levels of the experimental theater with ease. I wear sneakers with my dress to her birthday picnic instead of heels, just in case.

A few days later, I am laid off from my job seemingly out of the blue, and my whole world shatters. It keeps shattering. But at least my health, it is stable. Or so, it seems.

January/February, 2025

I am in Spain on vacation, treating my youngest sister to a belated graduation trip. A few days into the trip, I start to feel weird. I have severe pins-and-needles in my feet, and then start to not be able to feel my feet at all.

Maybe it is from carrying my heavy suitcase the wrong way around the statement-making spiral staircase in our Sevilla Airbnb. Maybe it’s from running around the Iberian Peninsula in my beloved Prada boots with the high heels, over cobblestoned bridges and up Mozarab minarets.

I barely make it through the airport home, but my sister helps me and we joke about my mobility issues, on the brink of my 35th birthday.

A few days later, I am in the hospital for the first time as a patient. I’ve lost sensation in my most private parts, and my feet still feel dead. Shocks of electricity course through me sporadically, paralyzing me. I feel so weak, like a paper doll. I have no center of gravity, and every step makes me feel my whole body is crumbling, like I am made of sand.

A few weeks ago, I walked 12 miles with ease, and did advanced Pilates tricks on the reformer. Now I barely stumble into the hospital ER intact, after my Uber drops me off half a block away. They keep me overnight and run a battery of tests, only to conclude that I have a herniated disc. My hospital bill for one night is an unconscionable $85,000, but luckily, I have a job and health insurance, which covers nearly all of it.

For weeks, I can barely walk. I go to physical therapy once or twice, but I hate it. I feel embarrassed about my overall physical weakness, and that I constantly have to pee. Eventually, all sensation returns to my body except for some neuropathy in my hands, which lingers for months. It is near-impossible to get an appointment with a neurologist. When I finally do, months later, it seems that I am more or less cured. I guess I’ll have to be more careful with my back when I travel.

February/March/April, 2026

I know something is wrong again, but I have no health insurance. I have been unemployed for almost a year now, in spite of my best efforts. I have attended dozens of interviews, prepared and presented countless hours of free strategy work and case studies. But the job market is abysmal. I am a polarizing person to a certain breed of corporate zealot, no matter how much I flatter and fake. I try so fucking hard to lobotomize myself back into viability, so I can be a functioning member of society again. Nothing is aligning.

Any money I still have needs to go toward my mortgage, my food, my pets. There is absolutely no room for a nearly 6-figure hospital bill, or higher (!) We are all so fragile, under late-stage capitalism.

I have good days, and bad days. Some days, I lose sensations in places that scare me. Some days, I am barely able to get out of bed. I try to use whatever energy I have to make social media content, apply for jobs, and finish my book. I am fighting for my life back on every front, but nothing is working.

Eventually my body returns to set point, but I lose weeks of life to whatever weakness this is. I have a bad back, I’m in perimenopause, I have Ehlers-Danlos. These are the things I Google and self-diagnose, in the night.

April/May, 2026

I have some weird eye pain, but it goes away with drops after a few days. It’s another $300+ I shouldn’t be spending, but my vision is important.

A few weeks later, my vision in the same eye is really blurry. I ignore it for about a week, letting my other eye correct for it, but it doesn’t go away.

I go to the eye doctor, thinking I’ll be there for less than an hour. He runs more and more tests, growing increasingly concerned. I’m put in a VR headset that angrily intones over and over to pay attention, in snide robot voice. I am paying attention, but I don’t see anything to pay attention to. I am legally blind in my right eye.

I spend the better part of the week at the hospital. Eventually, they’re able to save my eyesight, which feels like a miracle. For a day or so, I feel wonderful. I am so grateful to have the ability to see perfectly again, after looking through a dark myst for days.

But I leave the hospital with more than just my 20/20 vision. Now I also possess a very likely diagnosis of a disease, that will one day take everything from me.