Onwriting

I’ve invented a new verb: onwriting. It’s when a novelist ‘finishes’ their novel but can’t actually bear to let the characters go, so she keeps writing their story. I’m currently about 140 pages into the onwriting of Orvieto and I can’t seem to stop. 

Yesterday, I realized that onwriting is actually a good thing, and not just some weird, unbalanced hobby of the crazy novelist. It’s keeping me writing fit - working out daily at my keyboard, honing my comedic timing, my dialog, my storytelling, and thus playing a vital role in my writing health, just like going to the gym is crucial for my physical wellbeing. So it’s actually important and I don’t have to stop. Sweet! Because those characters: did I mention I can’t let them go?

When I’m not onwriting, blogging can play the same role. I realize it doesn’t really matter to me what I blog about, I just want to write. I want to make people laugh, and think, and nod their heads yes, that is exactly how it feels to be a human on the planet in this time, and feel that sense of connection that a good writer can generate by distilling ordinary human experience into the perfect paragraph. I want to write gorgeously, so I stop my readers in their tracks, so they want to re-read my sentences because they are so beautiful. Like any skill, that stuff doesn’t just flow out of the pen unbidden. You have to work at it. Really hard. Every day. Onwriting is building sweat equity on the page. And I’m not nearly at gorgeous yet.

I’m in Los Angeles with my High School Junior on our first trip to look at colleges. I splashed out on a hotel on Venice Beach so she’d have the best experience possible. From the first time she saw L.A. last summer, she knew she wanted to be here. Flying in this time just confirmed it for her, something about the shimmering sprawl, the endless waves of city fanning out in all directions, no edges in sight even from a thousand feet up. I pointed out the Hollywood sign to her, and we tried to identify the actual Downtown among a number of downtowns. So immense, diverse, and exciting for a kid who’s grown up in the bubble of Marin.

Ten minutes on Venice Beach and she had new shades, a new nose ring, and a new town. She doesn’t know which college or what major yet, but she knows she wants to be here. And I think she’s right. L.A. would not be for me, but our kids have this strange knack for being utterly unlike us. Who is this kid? My frequent thought when she was small. Now it’s more like look who this kid is! I love her for her excitement, her thrill at the new and adventurous, her easy certainty about what’s right for her. 

We’ve always travelled well together. Me, I get excited the moment I smell jet fuel from the 101. She’s a little less thrilled about the process, but loves now to be elsewhere. And loves to go home. After annual trips to Ireland since birth, she’s a pretty savvy traveler and can find her way anywhere. I rely on her iPhone navigational skills to help me get around foreign cities. Last year she directed me out of Florence on a busy Sunday afternoon. Yesterday she got me seamlessly from LAX to our hotel. But there’s always something to learn.

As we passed through the checkpoint exit of the rental car place, the attendant asked me to sign one last piece of paper. What’s this now? I asked, as I signed. Existing damage to the car, he said. I hadn’t even checked it. I could have been signing anything. Ok ma’am, you just signed away your daughter. We will take her now. Thank you, have a nice day.

Always read what they’re asking you to sign before you sign, I advised her as we drove away laughing. 

Do You Think Grandad’s Going To Make It?

There’s a joke in Dublin that goes like this: you see an ambulance screaming down the road with its sirens going and you say “Sure he’ll never sell any ice-creams going at that speed!”

I know I could never be an EMT. I could never be an ER nurse or, god forbid, an ICU nurse. It would bore me to death taking care of patients who can’t chat because they’re in a coma. And the constant adrenalin of the emergency environment would wear me out in about two days. There are emergencies at hospice, but they are mercifully few and far between. However, they can come in handy.

It’s my goal the next time I’m pulled over for speeding while I’m at work to flash my hospice badge and say earnestly “Officer, I’m on my way to give morphine to a dying woman who can’t breathe. You’re going to keep me here while you check my license and registration? She can’t breathe.” Of course, it’s 99% likely to be a complete lie, since I am rarely rushing to people who can’t breathe but I can’t wait to try it out and see if it works. Not that I speed. Just sayin’.

Sometimes I do have to rush to people though. And sometimes I rush to people and I really didn’t need to. There was that patient about whom I received a text from one of my co-workers: “Looks like he’s dying, come quick.” So I sped over there and on the way I called his daughter and told her to speed over there. Then we got there and he opened his eyes and said “Hi! Can I have some oatmeal?”

But sometimes the people I rush to really need to be rushed to. Breathing can change at the end of life and frankly, it can sound really awful. People make noises like they are drowning. It’s mostly because their swallow mechanism is gone, so the saliva that they would normally swallow just pools in the back of their throat and they have to breathe through it. Family members get really distraught and with good reason: it is most unpleasant to listen to. Our line, and it’s well researched, is always that by the time their loved one is making those sounds, they are well beyond feeling anything. But it’s distressing for everyone at the bedside, (including me, because there have been those one or two patients who have been conscious through it, and I was all out of comforting lines then). So there are certain medications (morphine, hyoscyamine) that we give to try and manage what is known outside of hospice as the death rattle. We never call it that. Among ourselves, we call it terminal secretions, and to families we talk about noisy breathing. I mean, who wants to hear from their hospice nurse: “So when he gets near the end, you might hear your dad give the death rattle. Don’t worry. It’s just his throat filling up with liquid he can no longer swallow. Really not a problem.”

Which brings me to hospice lingo. Like any specialty, hospice has its own specialized vocabulary, which, being a word freak, I love. Cheyne-Stoking, actively dying, imminence. We bandy these terms around among ourselves, but it’s just not a great idea to use them with patients or their families. Medical terminology confuses and alienates most folk. Unless they are physicians or lawyers. Lawyers like you to be as obtuse as possible so they can feel at home. And physicians already know what phenobarbitol is used for, so you don’t have to sugarcoat it. 

But for the most part, we try to talk in regular English. Near the end, mom may start to get some extra energy you wouldn’t have thought she still had in her. She might pick at the bedclothes. She might try to get up and walk around. Sounds better than mom’s got terminal agitation, give her a shot of haldol. 

We get pretty skilled at putting things in layman’s terms, but sometimes we just get it plain wrong. A coworker of mine tells a great story about an elderly patient she had, whose six-year-old grandson lived upstairs from him and loved him dearly. One day, she was helping grandad out of bed to the bathroom and the grandson was standing by. Grandad was by this time far gone in dementia and couldn’t understand anything that was said around him. The boy looked at her earnestly and said “Do you think grandad’s going to make it?” 

“Well,” began my friend, kicking into nurse-explains-death-to-young-child gear, “he is getting very close now to the end of his life and it’s unclear really how much longer he’ll be with us.” She went on a bit longer giving the kid a gentle lesson in letting go of grandad. He listened patiently. When she had finished, he said “I meant do you think grandad’s going to make it to the bathroom?”

Texting at the Lights

Lately I've been posting about my job as a hospice nurse. There's such a wealth of material that occurs daily, I could have written ten books by now, but sadly most of the stories cannot be told because they involve real people's protected health information. However, I have found a way to write a little about the bizarre, profound, and strangely funny world I work in.

Take this morning, for example. It’s Saturday and I don’t work Saturdays. But this is the conversation that took place between me and my daughter right before we left the house.

Jess: Ready, mom?
Me: Yep, wallet, keys, let me just see if my patient’s still alive. [Checks work phone.] Yes! Ok, good to go...

One of the trials of being a hospice nurse at an oversubscribed understaffed hospice is you never have enough time to do everything. Thus, you have to get creative. This involves activities that sometimes push the boundaries of legality: like texting at the lights. Now we have this great internal text tool that is HIPPAA compliant. It’s called Tiger Text. The advantage of Tiger Text is you can text anything about a patient and it’s all completely confidential, a closed system, and the texts disappear after 24 hours. So you don’t have to worry, like you do with regular text or email, that you will someday have to stand up in court and defend what you typed before a judge, a jury of your peers, and some irate family member of the decedent. You can just say it like it is. The disadvantage of Tiger Text is that it’s a really lame app with an over-zealous autocorrect system and no intelligence. So it rarely learns your frequently typed words, and yet it tries desperately to ‘correct’ the most ordinary phrases with rather extraordinary results. Thus, although you might say it like it is, Tiger Text will probably say it like it...isn’t.

Consider this recent text exchange between me and my supervisor:

Me: Chat with you by phone when i have time?

Me: I

Me: You

Supervisor: You have time? I have time? What??

Me: when you have time. Damn tt.

Supervisor: Sure. And Paula will do that visit.

Me: Puck c!

Me: Punch k!

Me: Picnic!! This day is like a picnic, I was trying to say.

Me: Must stop texting at the lights!

Why Tiger Text would take the word “picnic” and decide that what I really wanted to type was either “Puck c” or “Punch k” is beyond me. But that is the kind of thing that happens in Tiger Text world and everybody learns to live with it. We all learn a sort of insanely irrational and yet deeply intuitive translation skill that allows us to continue seamlessly with our hectic days. 

So next time my supervisor texts me “Please fix ogden enchilada” I’ll just go ahead and fix that open encounter.

Hospice Nurse Rocks Out

People sometimes say to me: “I don’t know how you do what you do, it must be so depressing.”

I tend to minimize the depressing nature of my work when I respond, because really, who in their right minds would choose to spend their days around dying folks?

And yet, I can always say to them with complete honesty that I love my work.

I LOVE my work.

Why do I love it so much?

One of the reasons is that I get to rock out on the freeway between patients. Our hospice doesn’t have a facility, we visit our patients wherever they live. So sometimes I have a 20 minute drive between patients. Even when there’s only a 5 minute drive, there’s always time for a little loud, sometimes very loud, music. It’s how I decompress after an hour of paying close attention to the business of death. I get in my car, which is really my office, as well as my restaurant, my sanctuary, and my safe space, and I crank up the music as I pull away from the House of Death.

I have bluetooth, so the music starts as soon as I turn the ignition on. I have a playlist that I cycle endlessly. Something for every mood. Sometimes it’s U2’s “Miracle of Joey” or John Newman’s “Love Me Again” or even (if it was a particularly depressing visit) Nathaniel Rateliff’s “S.O.B.” Nothing like a drinking song at top volume at 10am. I wonder occasionally whether the folks back in the House of Death hear this sudden blast of loud music as I pull away. If they do, I hope it brightens up their day a little, rather than speeding them on their way.

Sometimes I need something a little more philosophical. If I just had a psych-socially profound visit with some family member - maybe a husband whose wife of 40 years is close to death and I asked him what he plans to do with himself after she goes; or maybe a son or daughter who has flown in for mom or dad’s passing and has a ton of unresolved stuff to work through - I may need Joe Purdy’s “Wash Away.” 

“I got troubles enough, but not today, cos they’re gonna wash away, they’re gonna wash away

And oh, I’ve been crying, I’ve been crying, but oh, no more crying...”

Or maybe I just visited a patient I really love, someone I’ve become deeply connected to and they just took a turn for the worse. I’m looking at the trajectory and I’ve seen it before, I know pretty much what the next days or weeks hold, and I need to come to terms with that myself before I get to my next patient. I need to allow myself a few minutes to grieve. I need a song that’s guaranteed to bring to the surface those tears that are lurking just below it. So I’ll put on Gregory Alan Isakov: The Universe, or Words, or Amsterdam. Crying at the lights. It’s either that or eating lunch or texting. A hospice nurse never just sits there waiting for green.