Let's Talk About Gastroparesis
plus, a few book recommendations for disability pride month
A lot of great creators have put out content as a guide to Disability Pride Month, but I wanted to put out one tailored for book lovers! So if you haven’t checked it out already, head over to Book Riot to read “A Book Lover’s Guide to Disability Pride Month.”
Throughout Disability Pride Month, I’ve been posting once a day on my Instagram to try to raise awareness for people like me and to give people more disabled book recommendations. I’m including them here so folks can read them all in one place. So far, all of these posts have been written when I feel like a decaying human carcass. But thank you for bearing with me and my brain fog.
[CW: gastrointestinal illness]
Picture it: it’s the summer of 2012. I've just hit my one-year anniversary of my life-saving emergency colon resection surgery. I have a new lease on life, an incredible boyfriend, and a graduate assistant position at a university press that would pay for my grad school tuition. I felt like I was living a life hailed as inspirational, a true triumph of modern medicine.
But a month after I graduated college and started my new job, I started throwing up in the evening. I’d immediately feel better and try to eat again with the same result. At first I thought my body was just radiating anxiety. But even when I’d adjusted to my new job, I still struggled with food.
For five semesters, I threw up every day, sometimes multiple times a day. My migraines intensified, making all of my James Joyce research swim before my eyes. I sat exams, gave presentations, and turned in papers right after running to the bathroom and praying someone wouldn’t hear me losing it in the stall next door.
It wasn’t until my last semester of grad school that we finally figured out that I had gastroparesis, a condition where the stomach experiences some form of paralysis and doesn’t empty properly. The non-science-y version of this means that your stomach freaks out and you throw up, or if you do keep it down, you are in intense amounts of pain. Extreme versions of this cause an almost complete paralysis, and many patients require a feeding tube.
When I graduated with my M.A. (finally), it felt like a triumph, yet another inspirational story for the masses! But it wasn’t, because, as I quickly realized, those types of stories are just fairytales we tell ourselves so we don’t have to face the stark reality that with many chronic illnesses, no one is coming to save us. There is no cure. This disease IS our ever after.
Fast forward to 2022, and I still live with gastroparesis. That’s the thing about chronic illness: it’s ongoing, all the time, ever present. Before COVID, when I’d go out with friends, I rarely ate while I was out of the house. The past decade has proved that it wasn’t worth the risk. Sure, I might seem a little odd to some of my friends, but at least not eating meant I could hang out with them without having to run for the bathroom all of the time.
Managing gastroparesis takes so much energy, especially when you don’t have a lot of it to spare in the first place. And for me, it’s worth it. I still have a lot to keep getting out of bed for.
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha
For awhile now, I’ve been going through Care Work, and annotating the print edition, which helps me better engage with the text as I listen to the audiobook. (Nothing like an accommodation work around, am I right?)
If you want to seriously engage with the disability rights movement, you have to also learn about disability justice, and this book is a great intro to those ideas. Care Work also highlights the vital importance of queer BIPOC women and femmes in disability rights movements. The author has also included a detailed sources and further reading section in the back of the book, so you will never run out of books about disability.
For more books about disability justice, check out my list over on Book Riot, “10 Books on Disability Justice”.
Giving Up the Ghost by Hilary Mantel
Two-time Booker winner Hilary Mantel might be more well known for her fiction, but she’s also an incredible memoir writer. She dedicates much of Giving Up the Ghost to her childhood, filling pages and pages with her Catholic guilt, her hectic family situation, and her strange fever dreams.
While I adore her writing throughout the memoir, Mantel’s writing in regards to her chronic illness captivated me. Mantel experienced intense pain with her periods, but her doctors doubted that she was actually in that much pain. Some of them even completely wrote off her pain as all in her head. In reality, she had endometriosis.
I deeply related to so much of this book. While I always have had irregular periods, in my early twenties, I began experiencing horrific pain with them. My doctor diagnosed me with PCOS pretty quickly, but the doctor didn’t think that explained all of my pain. Ten years later, I still don’t have any effective treatment for my misbehaving barren wasteland of a uterus. I still have to mark out one week out of every five because I know how I’m going to feel. It’s always difficult to see all the time I’m losing to my monster of an organ.
Even though Mantel’s experience happened decades before mine, we still had doctors that just chucked a seemingly random assortment of medications at our heads, threw up their hands, and let the chronic illness gods decide our fate. Mantel experienced years of her doctors trying out different medications that gave her a slew of horrible side affects that often seemed worse than the endometriosis itself.
All of us deserve better uterus care. We deserve better pain management. We deserve a more comprehensive approach that takes both physical and mental health seriously. Instead, we have whatever this *gestures at hellscape* is.
At least we have books.
Things I Made That Went Up This Week
I love Frankie Corzo! here are some of my favorite audiobooks that she’s performed.
I always struggled to find fiction books that feature disabled characters (preferably written by similarly disabled authors). So if you’re like me, here are seven great options.