Words, Tears, and Survival

A conversation with myself

Photo by USGS

Your readers haven’t heard much from you in a while, how have things been lately?

They’re trending in the right direction. The past month or so was tough, though. 

My almost six-year-old daughter Em had bilateral hip replacement surgery a little over a month ago. The balls in the joints of both of her hips had steadily been coming out of their sockets—her left side a little more than her right—due to her cerebral palsy and how she’s unable to stand like a neurotypical kid. We’ve known she would need to get the surgery for a few years, so it wasn’t a surprise or anything.

Leading up to the surgery, I wasn’t all that worried that something might go wrong during it. I was more anxious about what her recovery might look like afterward. 

This worry was compounded by what happened leading up to the surgery. She had casts on both her legs. Not because she broke something. They were on to temporarily get her feet into a better position since she tends to point her toes too much, making it difficult for her to wear foot braces and practice standing in her stander device. 

For a couple of weeks, she would wake up a bunch of times each night screaming. She would usually go back to sleep fairly quickly, so we thought maybe she was having bad dreams. But when the doctor eventually cut the casts off, I felt my heart drop when I saw some parts of her feet had been rubbed raw. 

Those screams were her trying to tell us that she was hurting. 

Shit, hang on a sec.

No worries.

Okay, I’m back

What happened?

She just screamed out as I was writing that sentence about her screaming.

Wow, really?

Yeah, she’s been doing it again lately. 

We don’t think she’s in pain now, although she does have this foam wedge thing that sits between her legs and is strapped onto them to keep them at a certain angle during her recovery. It’s soft, but I can’t imagine being in a fixed position all night long is all that comfortable. 

I don’t know. It’s hard for us to know exactly how she’s feeling since she’s non-verbal.

How do you decipher what’s going on in her world if she’s unable to tell you?

Well, in a way, we sort of guess. 

She can’t form words, but she can make noises. And she can certainly get loud. We can usually tell the difference between her “I don’t like this song” and her “I’m tired” cries. She also has both happy and unhappy screams. 

Her smile can tell us a lot. Same thing when she doesn’t smile. We sometimes ask her to pick between two options. A smile means yes and she usually doesn’t respond if it’s a no.

Her eyes can show her emotions too. They get big and open wide when she’s excited and engaged. And they get droopy when she’s tired. That’s pretty standard stuff for humans. Our eyes can reveal a lot of non-verbal information.

She’s also continuing to work on using some communication apps on her school iPad. The apps are pretty rudimentary for her right now, but we’re hoping she can eventually use them to communicate more complex thoughts.

It’s all a work in progress. And progress is going to be slow.

Interestingly, your creative work and professional work at Foster have words and language at their heart, yet Em can’t express herself in that way. There’s a perverse irony to that, isn’t there?

Thinking about this is one of the most surefire ways to make me cry.

I could see how someone else might look at it like it’s the universe’s way of punishing me for something else I did. I don’t really buy into that, though. I’m a good person that, sure, has occasionally been inconsiderate or aloof or perhaps even an asshole to someone else, but by and large I’m a good person who doesn’t deserve to be punished for anything.

It’s not as simple as the universe saying, “Look, you did some not-great stuff and you’re gonna have to pay somehow. So since you seem to like words and find them pretty darn important, we’re gonna take them away from your daughter. Consider the balance of the universe (i.e. us) restored now. Good luck!”

This isn’t really about me and my experience. Sure, it’s challenging for me. But ultimately more challenging for Em. Because as she gets older, she’ll want to express herself in ever more complex and nuanced ways.

All that being said, yes, it’s hard. 

That’s why the tears start welling up when I sit with it and allow myself to feel it. In some ways, it would be easier if I could explain it away as retribution meted out by the universe and live my life forever feeling guilty and ashamed about whatever I did to bring this upon my family. Yet I can’t, and that would be an awful way to live. And instead, it just feels random and unlucky.

Is this part of why you haven’t published that much lately?

I’ve been writing a fair amount for work, including an edition of our Substack publication called Fosterverse Weekly. Here’s a recent one about our next Cohort that starts on Monday, which you should apply for (the deadline is today!) if you’re a writer who’s looking to write alongside other creative people and go deeper into your writing practice.

You can’t build without a proper foundation

But it’s been hard for me to write anything longer form for myself lately.

I get started. Jot down a few sentences. Sometimes I keep them. Most of the time I delete them and start over, or, more than likely, I get distracted by something else entirely. This post has taken me the better part of three weeks to write. 

For a while, I thought this was run-of-the-mill resistance, meaning there was some type of fear holding me back from creating. I think there’s more to it, though.

What do you mean there’s more to it?

This is a roundabout way of explaining, but here goes.

I finished listening to the book Faith, Hope, and Carnage by Nick Cave a couple of weeks ago. I became kind of obsessed with it—jotting down quotes and going out of my way to mention parts of the book to friends. By the way, the format of the book inspired this post since it’s written as a conversation between Nick and his friend Sean O’Hagan.

Towards the end, Nick talks about the effect grief has had on him since his son died suddenly in an accident. He described how his mind felt cloudy and he had trouble focusing on anything for an extended period. A few months after his son’s passing, he was being filmed for a documentary and he found himself wanting to be directed by the filmmaker, like, “Stand here. Say this,” which is antithetical to the entire point of a documentary film.

His feelings resonated with me and my recent experience around Em’s surgery. I found myself wanting to support and follow someone else’s lead, rather than take ownership and have a point of view of my own—both at work and home. It’s like being in survival mode. I just do the essential things to get through the day, but I don’t have any energy left to think too deeply about much of anything, even when I specifically carve out time to do so.

This is something people don’t talk about having a kid with a disability: you often don’t have the time or capacity to really feel things because you’re in survival mode almost constantly.

In the weeks leading up to Em’s surgery, my days were filled with her tube feeding meals, meds schedule, doctor appointments, driving to said appointments, and then maybe getting some work done.

I felt seen while listening to the book. And I felt less broken.

I can see why. It seems like a lot of what you’ve brought up can be tied back to grief, doesn’t it?

Yep, totally.

My initial thought was that my lack of focus was anxiety around Em’s surgery, and that was certainly there too, but this tendency started sooner and I think it’s more related to grief. 

Grief around Em’s disability. 

Grief around the loss of the life I could’ve had if her birth had gone differently. 

Grief around how it has sometimes strained my relationship with my wife, Allison. 

Grief around how I make my living and art through words and Em doesn’t have any yet. 

Wasn’t there a great gut-punch quote about grief in the Nick Cave book?

Oh yeah, it was a doozy. Let me find it real quick.

Here you go:

“There is a great deficit in the language around grief. It’s not something we are practised at as a society, because it is too hard to talk about and, more importantly, it’s too hard to listen to. So many grieving people just remain silent, trapped in their own secret thoughts, trapped in their own minds, with their only form of company being the dead themselves.”

Oof, yeah, that’s a good one.

We should probably wrap this up, huh? I feel like we’ve sufficiently updated folks for now. I mean, there’s some other stuff going on but I don’t feel ready to get into it quite yet.

Yeah, I was thinking the same thing.

Yeah, I knew you were.

Oh, right, of course you did.

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