Rolling

Friends. We moved! It's been a longtime coming and still was a hard decision to make. It's been a messy process. Speaking of messy, we are surrounded by boxes. The kids have started school and I have spent too many hours getting over-the-door hangers for every door I see. I texted Tim a picture of a hanger that holds belts the other day. Do you need one of these? This is what my life has become and I'm fine with it. Insert intelligent analysis of free labor done by women for home and country! But also, there is real food for me in chop wood, carry water work. (Wax on, wax off, etc.) I also feel like creativity thrives in constraints, and I'm trying to realize this in my body, to not panic about being a mom of somewhat small kids with ambitions of my own. 

I recently emailed a health update to family and friends. Traditionally I've been private about some of the details in my life (while also plastering photos of my kids on the internet) but something about this brain tumor has made me understand how much we are in this sordid mess together - this mess being life, of course, which is pretty heartbreaking. Of course I'm coming to see how much beauty is woven into heartbreak - you can't have one without the other. (If you'd like to read about my tumor diagnosis, I wrote about it here and about my surgery here.) If we learn nothing else from COVID, I hope we learn how intrinsically connected we all are. I'm speaking to myself here, too, someone who always needs a reminder that I can't do everything myself, and don't need to.

I've been feeling an itch to catalogue here more. I'm afraid what this will mean - will the writing be unpolished? Will I bore people with unwelcome anecdotes about children? (Why is it so hard to talk about parenthood and/or caring for young people while the experience itself is so profoundly transformative???)

In the past, I've been waiting to have things more together to share it with you. I think I've wanted to be entertaining or helpful or something. I think I've also wanted to be an impressive version of myself and . . . that version isn't coming! Lol. I might as well help myself by being present in my days and maybe sharing it with you? I'm not sure what form this will take. At first I was like, I'll do before and after photos of each room in our house! But while I'm obsessed with decorating interiors (I have never met a wall I didn't have an urge to paint or a throw pillow I didn't have an instant opinion on) I don't know how much I want to be influenced by what is or is not an "after" moment. I also really care about how a room feels, and feelings are hard to photograph which is why I'm a writer, not a fashion model. I'm not going to win prizes for all the floppy pants I wear (or will I??) but I can whine about sadness in an artful manner and that can win friends! Ha. To be honest, I think I have been more concerned about how artful I'm being or am not, and I'd rather focus on expression now both because it's a healthier way to operate and . . . it's a healthier way to operate. 

I'd like to visit this space more frequently and perhaps less cohesively. Personal snippets, helpful quotes, etc. etc. I need writing for clarity and I could use some clarity these days! If you're picturing me sobbing behind a mound of moving boxes, you're not not correct. I'm joking but you get the idea. There is something deeply soothing to me about making things. I honestly believe creativity is the core of who we are. So, see you soon?

My bedside is still piled with books (my son once tried to join me on the bed and couldn’t rest his head for all the volumes which he shoved aside with disgust. “Ugh! Why are you reading so many BOOKS?” I said honestly didn’t know, they just bring me joy.) Right now the piles tend toward theology; less fiction, more narratives of grief and tales of healing.  

[Reading Update: I just started What Happens at Night by Peter Cameron which Amelia gave me and it is beautiful. I'm also (still) trying to finish Underworld by Don DeLillo which I started with a friend last year because we are insane. It's like reading someone else's free-writes, snorting someone's practice pages. It happened to get published but didn't necessarily need to? I also don't hate it. It's just . . . long. I really like the subplot about the mystery garbage / barge sailing around the world looking for a place to land. It's DeLillo at his best, a darkly comic mirror held up to our worst habits.]

That’s the news from Lake Woebegone as we used to say before Garrison Keillor disappointed us all. I don’t intend to update you on my every dental cleaning, but I do want to acknowledge how much your support and inquiries mean to me. I am thinking of you all and hope your summers have been filled with sun and movement and what brings you joy.
 

More soon. 

Oh hi there

Friends. I have been unsure how to re-enter this space. It seems a little rude to drop "Got a brain tumor, see you soon!" on the webs and not check back in. The surgery went great. They got 95% percent of the thing, which was beautiful and absurd. My recovery has been somewhat uneventful. Things are *quite* good, all things considered, and I really mean that.

At the same time, the healing process in my experience is very slow and long and mysterious. A friend of mine who went through a terrible thing said people give you about six months, then they want you back to normal. I don't quite feel that way - having brain surgery is sort of a built-in Back Off! I'd like to meet the person who's like, "What's your problem? Snap out of it!" after you get a metal plate in your head. And, but, etc, etc, there is a lot on the surface of life that I have snapped out of pretty quickly, which can sometimes be difficult for everyone including me to remember what I've been through. (A week after getting out of the hospital, I went with Tim to pick up the kids at school and got horrified looks. What are you doing here?! You should be on your death bed! they seemed to say.)

There's so much to recount and I am filtering so many things through this experience, some quite banal. I still spend a lot of time resting and walking and doing whatever I want. I don't really feel like breaking down my vestibular schwannoma (my band name, like My Morning Jacket) or its medical effects in this space, but my balance is back to about 85% percent. I still regularly run into the trash can from all angles but in fairness to me, that thing pulls out of a special nook in the kitchen and Ellis also slams into it frequently. He's running in to share his fabulous and surprising announcements -"Hey, look!" ... "Did you know...?" ... etc etc - so much daily abundance and instantaneous miracles - and whack, a new little bruise.

Frankly, I am not sure how to talk about what I've been through yet (not unlike Chris Rock after Will Smith gave him that slap. Wink!). I'm not shy about what I've been through, but I also feel like, wow, that's a lot to summarize. I have had some new ideas about how to move forward with this space. In some ways, I'd like it to be more of a reflection on the challenges of life. Then I'm like, wow, that sounds like a lot of work.

In short, I don't know what I want and I'm sitting in a lot of uncertainty. However, that's pretty much always been my cozy spot. One of the big reliefs I felt after my diagnosis was that certain life choices - which may have appeared a little crazy but always helped me feel like myself - now feel doubly blessed. If the tumor had been malignant, this whole journey would have a WAY different flavor, but I'm not sure how many regrets I'd have. Yet something like this can't help but influence how I move forward. I'm asking myself lately, what really matters? what do I really need?

One of the somewhat devastating things about having a brain tumor is how inherently unfunny the topic is. When I was diagnosed, it felt like one of my biggest defense mechanisms was whisked away. It was hard to be the barer of the news, I have a brain tumor! I'm not out of the woods yet (fun fact: no one is?) but the surgery was majorly successful. From here, as we all do, I see what happens. Does the remaining bit grow back? Does it sit tight? What do I do now? What changes, if any, do I make? 

I return again and again to how truthful religious texts I've studied throughout my life have been. (Not necessarily the religious people, lol. Human foibles are real, including my own.) Across traditions, I have welcomed teachings on impermanence and acceptance and trust in ethereal things, and I now find those teachings bedrocks of my sanity. It's not that life is or was ever easy - even without medical crises of this size - but I come back to these teachings now, in what has turned out to be not a dress rehearsal for me.

Here's one from Pema Chodron in her book When Things Fall Apart, which is a comically dramatic title that sums up not only when sh*t gets real but also how a standard Tuesday can go awry:

"We don't deserve resolution; we deserve something better than that. We deserve our birthright, which is the middle way, an open state of mind that can relax with paradox and ambiguity."

This winter, I found myself saying the following to my friend: "It can be useful to think about death every day." She laughed which I appreciated because it's both true and delightful. The gift of a tumor is its holographic skeleton behind your days? Maybe. Having a brain tumor has, unfortunately, given a little gravitas to the things I've been trusting all along. Did I manifest this tumor as the ultimate practice for myself? I don't think so, but it does feel like I've been training for this moment for awhile.

And now, for funsies and the strong of heart, I am going to display before and after photos of my incision. The scar has faded even more than when these photos were taken in December. Do I feel like a Bad-A Mofo? Absolutely.

So far, my physical health is holding strong but it is fair to say I'm having several existential crises: first as a mother rediscovering the gifts of being here to care for my kids and also as an artist. How do you say the meaningful thing? When do you share and when do you study something further, listening to its secrets? Where does humor deflect and where does it illuminate? I am pondering these questions, along with the perennial one of what's for dinner. In some ways I am right where I've always been, but the rooms look a little different now.

XOXOXO

Getting There

The other day, Ellis was ready for school an hour before we needed to leave. He sat on the couch with a tray on his belly, crayon at the ready for entertainment, and he watched the digital clock. "We're getting there!" he said confidently, a marvelous statement of fact. Yes, I agreed, we're certainly getting there.

All summer, I worked on some essays and was deep in the books. As we got out of doors and into the sun, blogging was not something I felt the need to do. Then, in September, I was diagnosed with a benign brain tumor. "Are we writing about brain tumors on the internet?" I asked a friend. "Yes," she wrote back. "We are."

I had had some hearing loss, so I went to an ENT, who ordered an MRI. At the end of the summer, I took the test. As they were taking me out of the tube, a technician came and put me back in. As he explained that the doctor just wanted a few more tests, I knew then that they had seen something. After a few weeks of voicemails and computer messages and hold calls, I learned from some very kind people that I had a benign tumor on my vestibular nerve. It is too big to radiate and so odd to contemplate. My feelings about it change by the week but, mostly, I just want it removed. It is close to my facial nerve, a sobering fact of which the doctors have been uber-conscious. I have surgery scheduled to remove it in December and have been told that this nerve is at the top of their concerns.

It's safe to say that my sense of security has been shaken, but I really believe that this is a good thing. Books by Buddhist teachers have been piled on my shelves, which I find helpful for life in general--and especially parenting. A diagnosis like this, I realized quickly, is difficult to joke your way through. Instead, I've tried to be with the gravity as compassionately as possible, accepting all that arrives.

I was going to write a little post but instead I think I'll just list the art I've waded through all these months that I've been absent. I bathed myself in Brideshead Revisited this spring (hello, outstanding turquoise cover). I read Julie Klam's latest and have Ann Patchett's newest book of essays on my desk. Tim and I went on a Thomas Vinterberg binge this spring after Another Round was up for an Oscar. I think he's worth watching for the dark Danish interiors alone (although you can absolutely skip his first effort). For two nights, Tim tried an Updike novel around that time, too, after reading an interesting critical piece about it. The book hit him in the face both nights. Who needs Ambien, we joked, when you have Updike?

On the suggestion of a friend I read Beyond Birds & Bees: Bringing Home a New Message to our Kids About Sex, Love, and Equality, by Bonnie J. Rough, about sex education in the Netherlands and I highly recommend. As most nonfiction books about science can be, it's a little repetitive but the takeaway for me is that Dutch children who learn about their bodies and sex from infancy become young adults who have less teen pregnancy, fewer STDs, and a way healthier attitude about intimacy in general than the fear-based curriculum in other countries.

Sometime this summer, I read an Ethan Hawke novel. Tim passed by with a load of laundry in his arms and said, "I feel a Sut Nam post coming on." I thought so, too, and then did nothing. Maybe I was gardening or going to the beach? Maybe Ethan Hawke isn't as influential as one would hope?  

I hope to update this space somewhat more frequently but I also hold space for my turtle-like tendencies. They are something I've been embracing since my diagnosis and it feels pretty good.

I hope the news in your corner is far less dramatic these days. Sending love across the webs,
Kara

 

 

 

 

 

 

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