Call! Don't Fall!

What?

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

I’m in hell. Not actually, well, honestly I’m not sure. I’m pretty sure I’m in Kaiser Permanente on Sunset, next to my husband, who had a stroke a couple weeks ago. We have been moved from the ICU to the Step Down Unit and you can really feel the step down. The fluorescent lights in the hallway flicker, the AC sways from bone chilling to blood boiling every hour and the blue Scientology building looms large out the window, like Dracula’s castle on the hill. Every night around 10pm, and this is for real, someone whistles Twisted Nerve, like Daryl Hannah in Kill Bill. My life is a movie.

Matt can’t sit up on his own but he keeps asking to be carried out in a wheelbarrow and dumped into a jacuzzi. I have to get him out of here. If I’m struggling with reality, which I am, I can’t imagine what he’s feeling. But we seem to be in some sort of limbo, that’s it, it’s not hell, it’s limbo. Because we don’t have Kaiser insurance, but Matt was taken to Kaiser, we are having trouble getting anywhere. We need to transfer to a rehabilitation facility but we keep falling between the cracks on the way.

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

Oh that’s just the room next door. They have this conversation every day, if you can call it a conversation. There are signs on all the doors to the rooms saying “call, don’t fall.” A pithy rhyme, reminding patients to ask for help, not injure themselves trying to get to the toilet or sink or shower on their own.

The nurse could give more clarification, the patient could ask in a different way, but they’re stuck in this dance, neither one of them able to see a way out. I consider popping my head in, to offer a way out, but I’m just as lost. I’m in my own dance, my newborn is nursing at the moment, at every moment, she is my patient.

We are surrounded by loved ones, friends and family are constantly filtering through, offering to help ”in any way I need.” But I find myself faltering, not knowing what I need or how to ask for it.

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

NURSE: “Call, don’t fall.”

PATIENT: “What?”

By “what?” she is asking, “what does that mean?” not “what does that say?” She needs to understand her surroundings to understand how to ask for help. But the person she is asking is equally lost, just a cog in an overworked and broken down machine. Nobody here is in charge. The real entity in charge is not a person, but an insurance company, and their boss is Capital. But insurance is not in the room, as much as they try. Did I mention the ominous telehealth screens that checked in every couple hours?

The panopticon isn’t real, the tower is empty, but you aren’t alone. I momentarily consider a wheelbarrow, in what I call a Karen Giver fit, I threaten leaving AMA (that’s Against Medical Advice for those blessed not to know).

But I remember our friend Felix’s mom knows someone who used to work at this hospital. I call him and ask how things work, and don’t work, at the hospital. He tells me about hospitalists, giving me language to know what to ask for. He also tells me to print out pictures of Matt with friends and family and put them up. Not just for Matt, but to humanize Matt to the nurses and doctors who are drained by this system.

I also reach out to my half sisters’ mom, who has been in my life since, well for the whole thing. She is a retired emergency room nurse. She was actually my mom’s nurse when my mom moved home for hospice. She’s an amazing woman and she told me about case managers. Giving me more of a map.

I’m searching for the person in charge, someone to get us out of this limbo. I’ve learned that somebody called a Hospitalist (made up ass job title) is supposed to oversee Matt’s care and give the go ahead for his transfer. But they change every week. The transitions leave gaps in Matt’s care, causing complications and oversights which delay his discharge. I’ve learned that Matt supposedly has a case manager, who is supposed to work on his transfer. But she is out sick and the person covering her is overloaded. I learn that I am in charge.

I’m not alone, but I am in charge of my and Matt’s and our daughter’s path. The thought is heavy but empowering.

With me through the whole ride is my sister, Bianca. Every morning at the crack of dawn she drives from Manhattan Beach to East Hollywood to take me and my baby to the hospital. I bring her the pieces of my map and she helps me put them together.

But eventually she has to fly back to Virginia for her baby, her daughter, a teenager now, but her baby none the less. I still call her every morning, and we work together to find a way out.

She helps me start calling acute rehabilitation facilities. Oh yeah "Acute Rehabilitation Facilities” another piece of the puzzle I got from asking our friend Meagan, who’s brother went through a similar but different experience. That’s where we need to go next.

We eventually got Matt transferred to California Rehabilitation Institute. It was a harrowing trial, but we did it. He was a lot happier once we did, and his reality seemed brighter. He did believe he was in Australia for a little bit. But hey, it’s not Hell, though I hear the spiders are huge.

I say “we” because I was never alone. Honestly, I wanted to be alone, when hit with tragedy my instinct is to reclude. But I couldn’t, every step of the way I needed help. And every time I reached out the picture got a tiny bit clearer. “Call, don’t fall.” It means, you are not alone, but it is up to you to let someone know when you need help.