Friday, August 26, 2022

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 sexy 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 and thought I'd share it here. 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?

And for those of you who care (which should be ALL OF YOU, jkjk) my medical deets are below.
XOXO 






Tumor Talk with Kara - PBS show coming soon :)

I had another MRI in May and the remaining 5% of my tumor was pronounced stable. One of my doctors said he’s seen tumors of this type remain stable - even shrink or disappear, though that was extremely rare - for a decade or more. I’m not demanding the miracle of a 5% disappearance but I am comfortable seeing what time brings. The majority of vestibular schwannomas start growing again, but the span of time in which that happens is variable. One of my favorite doctors said “My hope is it starts growing when you’re 70 and we can safely radiate it, then you will be done.” He patted me on the shoulder - radiation as dreamy prognosis - but I appreciated his attitude and optimism. I continue to be grateful for these beautiful, attentive people in my life.

On the other side of surgery, I slid from the emergency category of things at the hospital into “okay to attach every teachable moment to this case.”  My appointments are now cozy with medical students studying under the doctors who attend me, and while this often adds time and awkward moments where I’m not the primary audience (if I am there’s usually also some sweet kid practicing their skills with a piece of technology) I feel privileged to be in this new, less urgent place. 

The news now is I’m going to try a hearing aid that will pick up sounds coming from the right side of my head, and I also had an eye appointment to address some slight double vision that is likely congenital. My non-medical opinion is that it is not related to the surgery because it has been consistent before and after, and the doctor distractedly agreed with my theory while also telling me to check back this fall. I have been given a “prism” patch to adhere to the left side of my glasses, to correct the double vision caused by a weakness in my left eye. Right now, I have a temporary model that looks like Ellis created it with his pair of Dollar Tree scissors, but I can get one ground into the glass permanently and plan to do so. 

In the meantime, there is a lot of water activity in the backyard, beach trips to “the big lake,” popsicle making, TV watching, letter writing, painting, walks in the woods and some camping. My bedside is still piled with books (Ellis 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.

Thanks for reading! If you do want an intelligent analysis of undervalued, invisible work, I haven't yet read Angela Garbes' Essential Labor but I read an interview with her and Virginia Sole-Smith, whose newsletter I read pretty consistently, and now I want to. More soon. 




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