I’ll be mostly offline for the next two weeks, so I’ll post my roundup of 2018 today. I hope your holiday of whatever stripe is lovely, and the start of 2019 exactly as exciting as you’d like it to be.
In terms of fiction, I published one very short story, “Glimmer,” and a book, So Lucky.
So Lucky was an interesting experience. When I finished the first shareable draft last year, I honestly didn’t now what to make of it. All I knew was that I wanted it published as fast as humanly possible. (Why? I’m not entirely sure; it just felt urgent. In one way it is urgent: there is not enough #OwnVoices fiction out there with disabled main characters—see the NYT article for more on this. The huge, yawning hole where our fiction should be pulled at me like a black hole.) I pondered publishing it as a novella, perhaps for Tor—because, hey, there’s a monster! and an invisible dog!—thinking they could get it done fast, but then my Hild editor unexpectedly made an offer to publish it as a novel, and to do it super fast. Seriously. For a book no one was expecting, getting it published, and well published, in less than a year is kind of amazing.
But that speed did have some negative consequences. The main problem was not knowing how to talk about the book. That is, I didn’t know how to talk about my own novel. It wasn’t like anything I’d done before. Every other fiction I’ve ever written has been a focalised heterotopia—it norms the Other through its treatment of the protagonist–but in disability terms So Lucky does not do that. It took me a long time to figure out how to describe it. So the ARC and catalogue copy described it as autobiographical fiction about the struggle with MS, which meant reviewers and buyers approached it with certain expectations which the book doesn’t meet. When one’s personal brand and public conversation don’t match the publishers’ marketing Bad Things Happen. (I talk about this general notion in Branding: It Burns.)
But after a while the book began to speak for itself, and reviews have improved tremendously (my favourite so far came out just two days ago). It’s beginning to get some traction, making a few Best Of lists and getting into some interesting shortlists. I have no idea where it will end up. The whole thing has been an enormous experiment that, on the whole, is going well.
I wrote a few nonfiction pieces, most notably “Rewriting the Old Disability Script” for the New York Times and “Remembering Ursula K Le Guin” for the Seattle Review of Books.
In terms of blog posts I wrote this year, what I suspect will end up having the most lasting impact is the piece for booksellers based on improving your bottom line by making your store and online presence more accessible. It wasn’t the most popular, that was the post about my new wheelchair-accessible minivan, but it will have ripple effects. As “How ableism affects a book review” is already doing.
I also started an irregular series of Reading posts, wherein I talk very briefly about the books (mostly fiction) I’ve been reading. It probably isn’t a coincidence that this year I was also asked to read many books with a view to providing endorsement than usual. That is, I was asked to read about the same number as usual, but a much higher proportion turned out to be books I actually liked well enough to blurb—and I wanted to talk about them.
Considering I had a book published this year, I didn’t do much travelling. This was my choice: I told my publishers No travel except local! We went to Portland and Bellingham and Olympia and Bainbridge Island for the book but most of the stuff I did was right here in Seattle. I also did a few staged conversations with other authors, such as Maria Dahvana Headley and Katrina Carrasco. I enjoy doing these things and helping other writers; I’ll do doing more next year. Keep a lookout for an event at Elliott Bay bookstore in March, with Sarah Schulman.
We were supposed to go to ICFA this spring but three days before we flew, a family member had a horrible accident that required Kelley’s attention 24/7 for a while. I also had to cancel a Seattle University class for their Creative Writing students. I hate to cancel things, but family comes first.
In April we spent a few days in Columbus where I gave the Ethel Louise Armstrong Lecture at OSU on disability arts and culture. I’d never been to Columbus. I was pleasantly surprised by both the physical access and the food (OSU makes their own smoked salmon, and their own vodka!)—I would totally go back if invited. And in late September Kelley and I got to spend a whole week together, just us (bliss!), on Orcas Island. There is nothing like an entire week of zero obligations, zero social media, and zero traffic or people noise—or any noise except the lap and plash of the water…
Health & Disability
It’s been a complicated year in terms of disability stuff. My health is fine, relatively speaking, but bureaucracy has been seriously tedious.
First of all, health insurance. As self-employed people, Kelley and I pay more in health insurance premiums per month than we do on our house payment (and houses and property tax here in Seattle are expensive). I’d tell you how much a year we spend on health-related costs but I doubt you’d believe it. For that much money you’d think we’d have the Rolls Royce of health plans but, well, no. Our plan limits us to one particular health system, which means I had to lose the internist I’ve been seeing for 22 years and find a new one. Which meant intern-shopping. Wow, there are a lot of doctors out there who essentially cannot practise medicine because they’re so rushed. I saw several in a row before I finally found one I like.
As a result of the limiting health insurance, I also have no physical therapist. I tried a handful who are qualified by this plan and either their style doesn’t work for me or they don’t have the equipment I need. I’ve cobbled together my own exercise regime—including something entirely fun, which I’ll talk about below—but with the loss of PT coinciding with transitioning from crutches to a wheelchair I am a lot less able and mobile than I should be.
Speaking of mobility, another gigantic effort and frustration this year was the wheelchair accessible van. It’s a great van—it’s just that I’m still not licenced to drive it. Why? Because no one will give me lessons. Seriously. There’s not a single driving school in Seattle that will teach me in my own adapted vehicle. I had five lessons in the car used by the University of Washington’s Driving Rebabilitation programme, but then I got the van—and they won’t let me use that. And believe me, driving a gigantic super-heavy vehicle with hand controls is utterly different from tooling about in a little red 2-door Toyota (the car I had when my legs still worked—15 years ago). So I’m feeling frustrated. My tentative plan is that I’ll just go take the test (my options: in Lynwood or Tacoma, because, that’s right, driving schools won’t give you the test in a hand-control vehicle, either), fail, work on what I did wrong, take the test again. Rinse and repeat as often as necessary.
This year Alice Wong and I hosted fewer #CripLit chats, mostly because we both had books coming out and so less time and bandwith for unpaid community-building stuff. Organising a #CripLit can be surprisingly time-consuming. Also, the demise of Storify meant we had to rebuild the #CripLit archives on Wakelet where you can read all the previous chats (though Alice did that, so all kudos to her).
I also wrote a few essays about #CripLit for other outlets, including one about the abysmal rate of disability in literature for the New York Times.
This year I got my first professional narrator gig: turning So Lucky into an audiobook for Macmillan Audio. I wrote about that here. I loved it! I now want to narrate all my books and short stories. And just for the hell of it, I narrated “Glimmer,” too—which you can listen to for free here.
Late this autumn, as part of my rather haphazard fitness regime, I took up boxing. Amazingly, I found a completely accessible gymn not too far from the house—and a boxing coach, Seth, who also uses a wheelchair.
I love to hit things. The harder and faster the better. The first martial art I studied, karate, was about straight-line strikes with hand, foot, knee, and elbow. Boxing is pretty different. I’m not learning Hoyle’s Rules but street boxing: how in a wheelchair to beat the shit out of anyone who thinks a crip is vulnerable. This is a fucking dream for me: I go to the gym, I hammer the shit out of several different heavy bags while dodging multiple opponents (Seth zooming at me and wacking me with pool noodles) on an obstacle course (orange traffic cones), then we swap tall tales of the fighting crip variety—except, y’know, they’re true—then I go drink beer and eat more than is strictly necessary, eyeing up rowdy people in the bar and thinking, Oh, yep. I could take that one out. Hit here, here, and here. Which is a place I used to live but had left by the wayside. It’s pretty cool re-engaging with old skills and picking up new ones.
It’s been a very long time since I taught self-defence and quite a while since I last started a martial art; I’d forgotten just how much I enjoy it. I’d also forgotten just how exahausting it is to physically go full-tilt—but it’s seriously good for me. I’d also forgotten how fast my arms and back muscle up; none of my t-shirts fit anymore, which is not good for my budget. Some of that, it’s true, is winter podge, but a lot of it is not. Next year (after I’ve bought new clothes, sigh) I’ll be trying to figure out a way to afford (money, time, and energy) to box more often.
So what’s on the docket for next year? One of the things I’m most excited about is giving one of the plenary speeches at a big academic conference in Vancouver, IONA: Early Medieval Studies on the Islands of the North Atlantic transformative networks, skills, theories, and methods for the future of the field. I can’t wait!
Just before that, I’ll be one of the headliners at the Orcas Island Literary Festival. I love Orcas, I love talking about books, and I love meeting readers—so if you’re in the region I hope you’ll consider coming. And probably a bit before that I’ll be in New York for a few days for something very important to me that I might talk about next year. (And, oh, it’s been a saga…)
I have some summer fun lined up, too, with family.
As I’ve already said, I’ll be doing more boxing. Depending on how other things go, I might also start teaching self-defence again. This time not just for women, but for marginalised groups in general. Given the increased hate out there for some groups I think we need something like this. And if a person in a wheelchair is confident of defending herself, others can be too. But this may take some time to figure out and set up, so don’t be surprised if you don’t hear anything for a while.
A big goal is to get my fucking driver’s licence. Info on that when I have it.
But my main focus of 2019 will be to finish Menewood, that is, the sequel to Hild. This is one of the biggest, most challenging and thrilling things I’ve ever tackled (I have to keep a spreadsheet of characters; as of yesterday, there are over 200 names). Right now it’s going well.
So 2019 will be busy. Full of interesting—in all senses of the word—people, events, and challenges. My plan, though, is to stay firmly anchored to the joy of life: to spend time out of doors, time with my sweetie, time with family and friends, new and old, as well as getting things done. Because the point of life is life, and what’s life without joy?
13 thoughts on “2018 in review”
Dearheart! I love to think of you boxing and to look forward to Menewood. Still feel the reverberations of my first read of So Lucky. Made me reexamine my innermost assumptions about illness and my own need to think in terms of recovery rather than endurance. Will write more … Dow
I’d like that
Nicola, I’ve been a fan since Slow River. I loved So Lucky and your voice reading it. I loved your column on Ursula, with whom I corresponded for decades; I wrote: She lived
two decades longer than I have. fearless,
she walked onto that pier of real old
age and told us what we needed
to know. then dived into the waiting
trembling ocean, and swam.
Beautifully put. Thank you for the holiday blessing and for everything else you’ve shared. I’m particularly interested in any details you offer about self defense moves or actions we can take while in a wheelchair.
I’ve been figuring stuff out. Next I’ll have to work out how to talk about it…
Nicola, it brightens my own state of mind hearing you so positive about your now.
Life is good.
Still enjoying everything you write, I have a Nicola-thon every other year; can’t wait to add Menewood to the parade. Still also want to be the one to record your readings, someday, tho’ as a retired lady without a studio that becomes a difficult proposition. A girl can dream…
Recording the Aud novels is something I think about a lot. And, y’know, you can rent studio time…
“…. another gigantic effort and frustration this year was the wheelchair accessible van. It’s a great van—it’s just that I’m still not licenced to drive it. Why? Because no one will give me lessons. Seriously. There’s not a single driving school in Seattle that will teach me in my own adapted vehicle. I had five lessons in the car used by the University of Washington’s Driving Rebabilitation programme, but then I got the van—and they won’t let me use that. …”
Good grief. This sounds like a Calif story! Surely your support group can find someone to help?
“As self-employed people, Kelley and I pay more in health insurance premiums per month than we do on our house payment (and houses and property tax here in Seattle are expensive). I’d tell you how much a year we spend on health-related costs but I doubt you’d believe it. For that much money you’d think we’d have the Rolls Royce of health plans but, well, no. Our plan limits us to one particular health system, which means I had to lose the internist I’ve been seeing for 22 years and find a new one. Which meant intern-shopping. Wow, there are a lot of doctors out there who essentially cannot practise medicine because they’re so rushed. I saw several in a row before I finally found one I like. …”
Familiar story, re finding a doctor you like. And we’re both on Medicare! — which is actually pretty decent insurance, but some doctors don’t take it. Forex, there is NO psychiatrist in our county who accepts Medicare! Not one! So I have to drive 3 hours to Camarillo. Fortunately, I like that doctor a lot. A Filipina with a lot of experience, and very helpful. Mostly I just have to see her twice a year, and we make a mini-vacation of it, with a night in Sta Barbara. Camarillo is boring suburbs — but does have a good rug cleaner (Orientals), that we’ve used a couple of times.
All the best for 2019. Box on! Write more! Get licensed!
Best wished on the driver’s licence. My mother got a van for her few years of teaching middle school. That was a boon for getting her from home to school to teach seventh graders (maybe two miles, in a VERY small town in North Carolina). Limited as it was, it was a big help.
The previous county superintendent had declared that he didn’t want any cripples in his school. (Fortunately he retired.
That should be “wishes” of course.
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