Essay: Only Human
plus, I was on NPR!
These days, when we talk about people being bedridden, we think of Charlie’s grandparents in Willy Wonka and the Chocolate Factory stacked alongside each other in the bed like sardines. Or perhaps some waifish Victorian woman wasting away in a sick bed comes to mind, her white nightgown sticking to her chest along her glistening collar bones. But in reality, for me anyway, being bedridden looks more like curling up on the couch with a blanket and an iPhone, surrounded by cups of various beverages always within arm’s reach.
I rarely mention that I live much of my life “couched,” as I call it. Most people tend to think I’m exaggerating or, worse, they pity me, believing I live a “poor quality of life.” But anyone who thinks my life is worth pitying lacks the ability to see beyond ableist norms. It’s a lack of imagination. It’s ignorance.
Several years ago, someone messaged me about a younger member of their family who had recently been diagnosed with a degenerative disease. This person told me, “Their life is over.” I remember staring at my phone, stunned and overwhelmed by the fact that this person thought that a disabled life of a certain kind wasn’t any life at all.
For years, this conversation has haunted my thoughts. Sometimes people even confirm my fears by saying something like, “Oh, I don’t know how you do that. I could never.” They say this like I’m a saint, superhuman, because obviously mere mortals couldn’t stand to live like that, right?
Last week, I finished The White Bathing Hut by Thorvald Steen (translated from the original Norwegian by James Anderson). The novel follows a young man who’s diagnosed with muscular dystrophy in his mid teens. The idea that he will eventually have to use a wheelchair horrifies him, and he contemplates ending his life rather than accepting his condition. Over the course of the novel, the protagonist works through his internalized ableism and learns that his life is still filled with joy and the world’s possibilities still shine vibrantly before him.
Steen shares the same genetic condition as his protagonist, and in a trailer for an upcoming documentary on his life, Steen describes his own mental health spiral after his diagnosis. But he goes on to say, “I’m glad I gave life a chance.”
Recently, I’ve been reading Care Work by Leah Lakshmi Piepzna-Samarasinha where in her introduction, she writes about her own work from bed:
Writing from bed is a time-honored disabled way of being an activist and cultural worker. It’s one the mainstream doesn’t often acknowledge but whose lineage stretches from Frida Kahlo painting in bed to Grace Lee Boggs writing in her wheelchair at age ninety-nine.
Somehow even when I’m sitting by myself, rolled up in one of my many blankets, I feel less alone every time I read Piepzna-Samarasinha’s words. There’s a mutual understanding that disabled people like us are equally valuable, and capable of beautiful lives.
But it’s hard. I doubt myself. Whenever memories of ableist comments echo through my mind, I try to remember the encouraging words of my disabled elders, like these writers. My life is mine, and it’s pretty great. And even as I weather through all of its ups and downs, I’m not a saint or a superhero. I’m only human.
Things I Made Recently
NPR: Weekend Edition with Ayesha Roscoe
There are moments in my life where I think, what just happened? That’s how I felt after I received the first message about doing this spot with NPR. But a week later, there I was, enthusiastically talking with the lovely Ayesha Roscoe about audiobooks.
Appodlachia - #123: Appalachian Expats
I don’t know if I’ve already mentioned this, but a few weeks ago, I was a guest on Appodlachia, one of my favorite Appalachian podcasts. Big John was out, so Chuck and I took the opportunity to chat about our shared experiences of being Expatalachians.
“10 Audiobook Narrators You Need to Follow on TikTok”
I’ve spent a lot of time on TikTok winding my way down the rabbit trail of audiobook narrator TikTok. Enjoy this list!
“11 Bookish Accessories That Make Reading More Accessible”
From small fixes to major accessibility tools, here are some great accommodations for disabled readers.
Book Riot’s Audiobooks Newsletter
I write Book Riot’s weekly audiobooks newsletter. You can subscribe here to read all about my favorite listens of the week, and you can read back issues here.
New BookTube Video
A (very) belated vlog went up this week. Content includes a few books and a lot of Corgi footage.
What I’ve Been Listening To This Week
On the Porch with Silas House - Wiley Cash (April 2022)
I love listening to Silas House interview authors from across the region. Besides having a voice made for radio, House has such a friendly way of discussing literature, immediately making his guests feel comfortable. I think this is the second time I’ve heard Wiley Cash on the show. It makes me feel all the more guilty that I have three of his books sitting unread on my TBR cart.
Keep Calm and Cook On with Julia Turshen - 71. Food + Romance: Jasmine Guillory
This episode is EVERYTHING. Two of my favorite guests that I had on Reading Women doing a podcast episode together all about food?? Yes, please!
You’re Wrong About - How Email Took Over the World w/ Anne Helen Petersen
Granted, my work habits have been much healthier of late, but I still appreciated this conversation about email, work, and the problem with constant availability.
Imaginary Worlds - Neurodivergent Futures
I loved seeing such excellent representation of Neurodivergent authors and their stories on this episode. I’ve been a bit disappointed in the overall lack of enthusiasm for Autism Acceptance/Awareness Month, so this podcast episode was a breath of fresh air.
Linking Links Linking
Field Notes: Harvest Edition
As a recent Field Notes common place book convert, I love these editions. The cute little vegetables and legumes—ugh! Yes, I ordered all six when I definitely did NOT need that many. But they're cute, so why not?
WitchyTwitchy on Twitch
Witchy is a Diné/Navajo Twitch streamer and content creator (her TikTok is fantastic). Shockingly, I’m a gamer that hasn’t made the inevitable journey over to Twitch until now, but I’m here now and I love every minute of it.
Since Witchy started her play through, I decided to play through Spiritfarer again on my Switch. The story begins when your character, Stella, wakes up in the spirit realm. Charon shows up and tells her that he is retiring and now she is the new Spiritfarer. Now you, as Stella, must wander around the river, collecting spirits from various islands and helping them with their last requests. Eventually you must guide each spirit to their hereafter, hugging them one last time before they disappear.
The characters are so well crafted, and as we help them complete their task, we learn more about them, only to have to say goodbye. A couple updates have come out since I played it the first time, so there were new spirits to befriend, quests to complete, and new islands to discover.
Your words touched my heart. I'm currently in my recliner with a blanket, pillow, and my coffee. I've been living with Reflex Sympathetic Dystrophy,a progressive chronic neuro pain disease that affects Sympathetic nervous system and immune system for 21 years. At first i was despondent knowing I had to give up the career I had and wondering how to be a mom of 4 year old when in & out of hospital. My mom gave me courage by telling me of her horrific memories in WWII & told me I will also find strength and my own way. 8 years ago I wrote my 1st novel in my recliner and my bed in spite of my pain. But I've been really struggling to find my purpose as I'm recovering from spinal surgery that has been very painful and traumatic(physically &emotionally). However,your words today(and your previous posts) along with Ms.Piepzna-Samarasinha’s (I'll be reading her book) quote have renewed my inspiration. You've reminded me that I am still capable and will find my own way again. Thank you and I wish you stay well and safe.p.s. Gwen and Dylan are adorable🥰