The Year of ___
an update on lost memories
I wrote this newsletter while fighting through a multi-week migraine while still trying to recover from hitting my head this past fall. I’ve left this newsletter mostly as is because I want to represent what my brain looks like, how it functions, how my thoughts now jerkily start and stop in my mind. I haven’t had a brain event anything like this since 2018, so here I will be starting—again—from scratch, so speak. Welcome to this start to my recovery, once again, through writing. Thank you for reading along.
Sometimes I imagine myself as the nimble writer who finds a way to write through every difficult event in their life. This version of myself would closet herself away in a disheveled, yet stylish, office decorated in the post cards from all of my fellow writer friends. I’d use a pencil to tie up my hair in a messy bun and drink endless cups of herbal tea—no caffeine for this writerly temple! Sometimes I dab crystal-like tears from my eyes with a monogrammed handkerchief and smile through the pain of small discomforts as my group chat cheers me on.
But I’m not this person. (Is anyone???) Instead, I wrap myself in an old blanket covered in Corgi hair and ugly cry into an old tea towel. My various friends swear at the latest part of my body to fall apart and ship me a box of wine or take me to Target, the promise land of never-ending aisles of household goods, where we try to walk off my worries. And the truth is, I’ve rarely had the chance to write.
I hit my head in September in the most ridiculous way. I was bending down to look at a box of rice at Costco when I heard something behind me. I whipped my head up, and drove my skull into the metal shelf above me. I tried not to cry as a friend talked to acquaintances of hers. The thudding, pounding raw ache of my head made everything in my head puff like cotton. My head, my very thoughts tender to the touch. Nothing felt concrete in my mind. I clutched a copy of Happiness Falls to my chest, a great prize for a terrible reason.
In one moment, I had erased months and months of progress. The new nimbleness I’d felt in the summer seized up again, my skull shrinking around my brain. Memories, ideas, words come in fits and starts. Goals for writing, goals for living, abandoned. I’ve sat in this very spot on the couch trying to type something, anything, but all I can think is, How can I write anything with a brain like mine?
December 3rd is International Day of Persons with Disabilities, inspiring many disabled folks to dub this month as “Disability December.” But this year, I’ve lost so much ground with gastroparesis and my head; I don’t feel like celebrating or creating lots of content. Sometimes it all feels too much and all I can do is to crawl into a hole and wait for my brain to heal. I guess part of what I’ve continued to learn this year is that it’s okay to feel overwhelmed, discouraged, or lost. That’s just another part of being disabled.
For the first time since September, I was able to write something for myself: my caption for International Day of Persons with Disabilities.
This is what disabled looks like.
When an extended family member saw me use a cane for the first time, they asked how sick I actually was because I looked great. A few weeks ago in a cafe, when a woman saw my portable stool, she said, “Why does someone so young need something like that?”
There’s no singular “look” to disability. Anyone, whatever their appearance, can be disabled. It’s important to acknowledge that people with visible disabilities face intense stigma on daily basis that people with invisible disabilities don’t experience. It’s also important to acknowledge that those of us with invisible disabilities face an ongoing denial that we are even disabled. Whether visible or invisible, in one form or another, we all face inaccessibility in our everyday lives.
The more accommodations I need, the more pushback I receive, especially here on social media as someone who can’t read text. Everyday, I scroll past graphics with paragraphs of text that isn’t captioned in the text box. I tap through story after story, and I can never really understand what they say. It doesn’t matter how much I WANT to be able to read the things I see; I still can’t read them.
It doesn’t matter how great you think I look because I’ve lost weight. I still struggle to digest even the simplest of foods. I dream of a day when I don’t feel hungry, light-headed, and weak as a kitten. My head pounds at the smallest change in air pressure, my skull too small for my brain. My hand joints still throb at the slightest touch; I still cry after accidentally bumping my hand on my lap desk.
No matter how you think my body “should” function, I’m still disabled.
Today is International Day of Persons with Disabilities. However we look to you, we are still disabled. We still have access needs that, most likely, aren’t being met. There is still more work to be done.
This is what disabled looks like.
I wrote the above almost a week ago. My writing is blocky, jumping over transitions and expecting readers to just follow along. Somehow, my brain thinks in multiple tenses at the same time. I haven’t edited any of these qualities out because I want you to see this snapshot to how my brain works during this extended state of cognitive confusion. Words don’t look right, and as I write this, I keep having to ask Alexa how to spell words that just seem a little off. Cognitive. Qualities. Confusion.
Cognitive and intellectual disabilities, and disabilities involving differences in our brains in general, are some of the most stigmatized. I’ve had SO MANY conversations with disabled people like me about how we are scared of people interacting with our deteriorating minds. How will they react? Will our friends still be okay with being seen with us?
Will they still see us as human?
Perhaps all of this *gestures at the above paragraphs* gives the impression that I live a life of woe, an existence regulated to the confused jumble of a scattered mind. It’s true I struggle to remember much from the past few months. But when I sit and think about the this fall, I remember impressions of bright moments. The sight of Dylan’s golden fur flashing in the sunlight as he chases his pink ball at the dog park. The look of complete adoration in Gwenllian’s eyes as she curls up on my lap. The smooth feel of my spouse’s hand in mine.
I might experience the world differently, it’s still a beautiful life. It’s mine.
As always, thank you for reading.
Things I Made Recently
BookTube
I’m back. I’m a mess. I’m having a great time.
Read Appalachia
I’ll have a Read Appalachia update newsletter out soon, but the season finale went up and I can’t believe I put out a whole season producing, hosting, and editing this solo. You can find the finale and all of the episode here.
Behind the Mic (AudioFile Magazine)
I’ve recorded SO MANY episodes for Behind the Mic, recommending audiobooks like And Then She Fell, The Wren The Wren, Opinions, Emily Wilson’s translation of The Iliad and Good Women. Subscribe to never miss one of my audiobook recs!
Book Riot
Read or Dead
I wrapped up my first full year as the co-host of Book Riot’s Read or Dead podcast. It’s been a wonderful way to expand my reading horizons and learn that, yes, I actually do like horror. Our favorite books of year episode just went up last week.
Newsletters
I edit newsletters for Book Riot: True Story, and Read This Book. You can subscribe to them here.
I appreciate this & you so much. Sending spoons 🖤