The Graceview Patient By Caitlin Starling - 2

Description

My first hospital room had a perfect view of the mountains.

It was high up in the west tower, and was designed for comfort almost as much as for clinical expediency. Nothing excessive, no velvet curtains or soft mood lighting, but everything was gleamingly new, and the bed was actually soft. The linens were fresh, not laundered a thousand times. The pillows hadn’t collapsed under the weight of so many other patients.

“A bit of VIP treatment!” chirped the aide who was getting me settled. “They even sprang for nicer showerheads when they remodeled this floor.”

I didn’t expect any VIP treatment. I wasn’t sure I wanted it, either. It was—ambitious. Too confident. It said, We know we can fix you , and I knew that was a lie.

But I must have been hopeful, back then. I can almost remember it. A small mercy: that the memory is fading, blurring into the indistinct ebb and flow of pain. I don’t think I could handle the agony of having that hope dashed. Better to lose it when I’m not looking.

I sat on the very edge of the bed, unsure of where to look, what to do. I’d brought a suitcase, but it was small. I wouldn’t be wearing much besides hospital gowns for the next couple months, and all my books were on my phone. I must have read over a hundred What to Pack When You’re Admitted lists, most of them geared toward expectant parents, and I’d dutifully packed what showed up again and again: a nice pillow, comfortable slippers, an eye mask, earplugs, a bathrobe. A little Bluetooth speaker. Pads, which I had to buy special, since my progesterone-only birth control had to be discontinued as part of the trial. While on it, I rarely bled. Without it, all bets would be off. I’d almost bought myself some hospital-cooperative pajamas, but I’d already run out of my meager budget on everything else.

And now I didn’t need most of it. The pillow looked great. There were already slippers right next to the bed. I wasn’t going to have a roommate, and I hated eye masks.

The aide set a bundle of fabric down next to me. “No rush, but you can get changed when you’re ready,” she said. “I’m going to let your nurse know you’re here, and she’ll be by to place your IV. Sound good?”

I nodded.

“Do you want a soda or juice while you’re waiting?”

“I’m okay,” I said.

Her smile was mechanical but genuine as she left the room.

I wasn’t okay, of course. I was in a hospital. This wasn’t labor and delivery. But there was that pesky hope thing again—I was here to be cured, wasn’t I? Maybe this was going to be the happiest day of my life, if only in hindsight.

My condition had already taken almost everything from me. I was here to claw it all back. My gums were aching with ulcers, my skin was covered in itchy, sensitive red patches, and I’d been eating soup all week because it was the only thing I could keep down. Fayette-Gehret syndrome is rare and overwhelming. An autoimmune disorder that targets epithelial cells, sending them into a frothing overdrive, it’s not life-threatening in and of itself, but the psychological and secondary physical effects are. There’s not enough of us to have flourishing support groups. We have to cobble together maintenance regimens from similar diseases: psoriasis, IBD, that sort of thing. And like with so many chronic disabling conditions, there’s not enough money going around for the medical care we need when things get infected or worse, let alone preventative care.

Except for this.

They found me. I’d given up looking. I’d kept up my technical writing work as long as I could, but my current flare was the worst I’d gone through yet, and I’d had to bow out of the meatier contracts. Burnt a few bridges in the process. Do you know what that feels like? To be forced to admit, I can’t take this job that buys me food because I hurt too much, I’m too exhausted, and if I push any harder it’ll get worse, not better ? My parents don’t. The few friends I’d managed to keep through a couple cross-country moves didn’t. Sympathy and support were drying up, and I could barely get out of bed some days, my body attacking itself with all the energy I didn’t have to stop it.

And then the rheumatologist I’d been seeing sporadically called. Not the office, her . “There’s a new experimental trial being run out of a local hospital,” she’d said. “You qualify.”

“What?”

“Treatment. Real treatment,” she’d said. “Not just playing Whac-A-Mole.”

“I can’t afford it.” I didn’t have any insurance at all at that point. I hadn’t been in to see her for over half a year.

“It’s covered.” A rustle of paper on the other end. “Actually, it’s paid.”

Paid . Paid to get experimented on—and to maybe get better. Bit of an ethical minefield, being paid to be a lab rat when you’re at the end of your rope, and maybe that should’ve been a red flag. But I looked into it. It’s totally normal. They’ll pay you to give you dysentery and see if their proposed treatment works.

With this, I came pre-broken.

“What’s the catch?” I asked, feeling a half step to the left of my own body, a buzzing sort of numbness, embodied unreality. “I mean, besides it probably not working.”

“The protocol looks promising,” she said.

“If I don’t get the placebo.”

“No placebo. The patient pool is small enough that they’re getting away without one. But it does require a long stay in the hospital.” She was getting impatient; her voice had gone from pleasant and helpful to clipped.

“How long?”

“Two to three months. I’m sorry, Margaret. I have an appointment to get to,” she said. “I’ll have the office send you the information. But with the way your labs have been trending, I strongly encourage you to accept.”

You’re not going to get a better offer went unsaid.

Two to three months was unimaginable. I’d need to break my lease, or sublet my tiny studio; I couldn’t afford to pay for a room I wasn’t using, even with the stipend from the trial. But it was so wild, so out there, that it felt almost—magical. Impossible, and therefore enticing.

I got the email a few hours later, hours I spent pacing my apartment and trying to choke down an instant breakfast shake purely for the calories. It came with a letter on pharmaceutical company letterhead, but the signature at the bottom looked like it was real, and scanned, not just digitally applied. It was addressed to my doctor’s office, and it described what I had to look forward to: a period of intensive inpatient treatment, where they’d destroy my viciously confused immune system and build me a new one. Like chemotherapy through a fun house mirror. I’d have round-the-clock nursing and a carefully controlled room to minimize the chances of getting sick while I had every last defense stripped away from me. They’d keep me safe.

All I had to do was let them have full access to my body. The letter was vague, and so was the informational packet, but I could read between the lines well enough. It wasn’t going to be pleasant.

But my life was unsustainable.

And even if I didn’t think it could be true, even if I didn’t really believe I could be fixed, at least I wouldn’t have to do this alone. Maybe they could shore up the parts of me that were failing the fastest.

So I said yes. I checked myself in. I let them take me to my room with a view, and I changed into the gown. I put on the soft socks with the grippy soles. I got into the hospital bed.

I still don’t know if that was the right decision.