Ramble in the Bramble

Entirely Missing the Point of the Garden God

Another hospital night, the kind that never really starts or ends, just folds over itself like damp cloth. My daughter is asleepish under that gauzy cap that holds the EEG leads in place. The mesh looks soft, almost cozy, but I know it must be making her hot and itchy. She twitches every so often, a twitch so tiny under all that wrapping. The respiratory bands around her chest and belly rise and fall, rise and fall. Her breathing is its own precarious philosophy lesson. Beside her, my wife has fallen into that uncomfortable half-sleep of a parent in a plastic recliner. Wait, I’m in the recliner. What’s she sleeping on? Oh the sofa pulls out to a bed. That’s new.

I bring a physical book to read each inpatient visit, there are enough screens in the room as it is (I recognize the hypocrisy as I write this on my phone screen). I brought Epicurus with me this time to stay awake. Stuff I have read many times and will read again. And again. Probably. But I’m not really doing philosophy tonight; I’m trying to live using philosophy, which feels messier. Less clear. More like rummaging through a stranger’s medicine cabinet looking for anything that might help.

The pulse-ox glows red on her toe like a little coal. It used to be the only cheerful color in the room but they’ve recently opened up a brand new floor, dedicated just to kiddo’s like her. Everything used to be beige or gray or the particular blue hospitals love that’s meant to be calming but mostly just reminds you of paperwork. Now it’s all purple and stars (I was told each floor represents a different elevation and ours being the top floor is space). The nurses, respiratory therapists, and sleep techs move in and out quietly. They are excellent. They remember to speak in low voices, the kind you use when you’re trying not to wake a baby or a bomb.

We’re here because we don’t know what’s causing what anymore. Are the seizures messing up her breathing, or is her breathing setting off the seizures? Or the third option, the one that hangs in the corner of the room like a smell: is her body just starting to give out. She’s been on hospice now for a bit, so technically the answer is already yes, but “yes” is a wide word. It can stretch for months, or fold in on itself overnight. We’re trying to find out where we are on that road. Or if there’s still a road at all.

She makes a soft half sigh, half snore sound and her chest rises just a little too slow. I put a hand on her sternum, like that will tell me anything the machines aren’t already streaming silently into the computers. I feel each of her little ribs lift under my palm. It should calm me. It doesn’t. She’s gotten so skinny recently.

Epicurus said something—and I’m paraphrasing very badly at two in the morning—about how long and short thoughts get you to the same place. Tonight I’m testing the short ones. The very short ones. She’s breathing. She’s here. I’m here. Breathe. Count. But we’re not in Epicurus’ garden. We’re in one with thorns, the one where every step scrapes. So my mind wanders to brambles. To all the things I wish I could prune away so she could have a clean path, one with soft grass and maybe sunlight. Weren’t we supposed to get rain? Lemme check. Nope, just clouds. Typical.

My wife is stirring, mumbling something about needing to switch places soon, but she falls asleep again before I can answer. I want her to rest. I also want her awake with me. I want both things at once and neither is possible. Epicurus would probably say something about desire and the way it pulls you out of the present. He’d be annoying about it too I bet, in that calm way that makes you suspect he was never awake at 3am with a medically fragile child. I know he died of kidney stones and dysentery so it’s not like he never experienced pain, but still—it’s been a long day with hard conversations and I’m tired and a Garden God I am not.

I’m not sure what I’m hoping for, to absorb the ataraxia off the page? I keep thinking about the maxim about how death is the one thing you can’t barricade yourself against. When it comes to death we all live in a city without walls. Tonight the city feels especially drafty. I look at my daughter’s face, mostly hidden under the wires, and wonder how many nights like this we have left. It’s a question I can’t unask once it appears. It just sits there. We are so pathetic in this small antiseptic room, why would death even bother? Surely there are other targets more deserving. But no one really deserves death, it’s not something you earn. Does anyone deserve life then? Because if miracles were a meritocracy there should be no such thing as pediatric hospice. I think what he’s getting at is more about why we should even be bothered by death. Death will do what death has always done, to everyone, everywhere, regardless of how great your walls or how clean your hospital room.

“Don’t spoil what you have by wishing for what’s absent.” He says that too. Or something like that. And sureI agree and nod along when I read it at home. Yes, wise, good, of course. But here it feels like someone telling you not to think about the exit in a burning building. I don’t want to spoil anything. I don’t want to want anything except what’s real. But the flesh is weak and the brain the weakest of it and it reaches. It just does. It reaches toward breathing that comes easier, nights that don’t shriek with alarms, mornings where we’re not waiting for seizures to let go of her. This goes along with another banger from him about how misfortunes must be cured with gratitude for what was, and the knowledge that the past can’t be undone. Gratitude is weird at this hour. It comes in flashes: her warm feet; my wife’s hand brushing mine; the way the nurse tucked a blanket around my daughter with the tenderness of someone wrapping a newborn. And then pain and fear flood in and wash it all away. The past is fixed. The future is currently being graphed in real time across half a dozen monitors. What’s left is this room, this night, this weird in-between space where she is here but fragile, where we are awake but exhausted, where the road feels narrow and the bramble closes in on both sides. Maybe these pains of uncertainty are worth having now to fend off future certain ones.

A nurse comes in to take vitals. My daughter squirms, gives a big clonus stretch, then settles again. The nurse asks me if I’m doing okay, if I need anything. I say I’m good. I lie. I’d love some coffee and a new brain for my girl. I know they’d get them for me if they could.

Epicurus has a line about making the later stretch of the road matter more than the early one. I would like to believe that’s what I’m doing right now. Paying attention. Staying awake. Holding her hand. But some nights the road feels less like something you walk on and more like something that walks on you. The red glow on her toe flickers again. The number on the monitor dips. I lean forward, heart in my throat. Then it rises back up. I release a breath I didn’t realize I was holding. My wife wakes this time, real waking. “She good?” she whispers. I say “For now,” which is the closest thing to honesty that exists in this room.

Epicurus says everyone leaves life like they’ve just been born. I don’t know what to do with that right now. Maybe it’s supposed to make dying feel less heavy. It doesn’t. But it does make me look at her face again. Her tiny mouth. The soft curls of her hair I know are hiding under the mesh. She shifts in her sleep, and I think: if she were born tonight, I would still choose her. Every version of her.

The clock says it’s early morning now. The sky says absolutely not, I guess that rain came after all. I close Epicurus and let his words rest on my thigh. I know there is a lot of that good magic in his words, it’s helped before. But tonight the ataraxia was harder to hold and I clearly am not living the sage’s ideas. Maybe tomorrow. I’m too tired to think and too awake to stop thinking. We won’t know until later what any of this means. The data will be read, interpreted, filtered through experts, and then handed to us with the soft voice people use when they don’t want to hurt you but know they might.

My daughter exhales. I match her. Just for a moment.

We’re still in the bramble. Morning won’t change that. We won’t know anything more than we already do until the doctors tell us and even then, probably not. Oh hey they’re coming in now. Must have been later than I thought.

It’s always later than I think.