Narrated version here.
Past couple of days have been pretty high pain days for me. Weather can really affect my pain levels, and the temperature has gone from snow, to icy freezing rain to almost spring-like temperatures accompanied by rain, and back down to cold enough to freeze, in the matter of hours or the course of a day.
I don’t use prescription pain meds, so that means I tend to have to lay on the couch or in bed when I’m not being mom and play minecraft or read or watch movies a lot. Sounds fun, hunh? It’s not. I’d much rather be out running, or going to the gym, or playing with my kids or cleaning my house (thank goodness I did that last week, cause I can’t move without a ton of pain right now) or doing ANYTHING except coping with this pain. Fibromyalgia pain has been likened to stage 4 cancer pain, and having given unmedicated birth twice, I can guarantee fibro pain on flare days is worse than unmedicated childbirth.
It’s nigh impossible to edit or write when I’m in this much pain, I can do it, but it takes more strength than I like to admit to stick to regular activities. It’s kinda hard to see when you need to wipe tears away just to look at your screen.
So, to read this interview Veronica Roth’s Carve the Mark during a high pain episode, and know, deep in my soul that because of her past success SO many people will buy and read that book, and form an opinion similar to Roth’s own because of her words, that chronic pain can, perhaps, be a gift… (even the interviewer made that conclusion).
I am really close to speechless with this, to be honest. It’s so evident that this book isn’t own voices, and while I will not ever say every issue should only be written by own voices folks, I do say, repeatedly, authors need to do their due diligence. They need to research and ask questions and more importantly LISTEN to the answer.
My heart aches at the massive misunderstanding of chronic pain this interview shows. The book can only show the same. It’s not a gift, it’s never a gift, and I don’t know of a single person with chronic pain that would ever wish it on another person (most of the time).
This is inspiration porn in the worst sort of way. I dread thinking of what the kids with chronic pain reading this book are going to take away from it.
…and when I’m being honest, which I do try to be, it burns me that this person who has such a backasswards view of chronic pain, who obviously didn’t do her research not only has a book deal that poorly represents something I live with every second of every day, she has a following who are going to go out and buy the book in droves, when I can’t get a book deal. There will likely be a movie deal down the road for this tragedy as well.
No. I won’t read the book, I don’t need to to know the representation is terrible. I won’t go twitter drag that author either, even though a small part of me would like to. I’ve spoken my piece and shared my educated opinion on it. That’s got to be enough because I won’t be a bully.
I’m going to go write my own works that feature ownvoices chronic pain sufferers, and I will go listen to my sources about issues that don’t touch me deeply, so that I can do MY due diligence and get it right. I will also buy, read and review a few own voices CP stories.
It’s all I can do, small fish that I am. Big fish like Roth… damn. Just know that her view of chronic pain is wrong. So, so wrong.
I have a Patreon, if you want to help support someone who actually does suffer from chronic pain, and who does have characters with chronic pain or ASD in my stories.
You know, instead of going out and buying Roth’s book. I don’t even want to read the divergent series now, just because of this.
Shout out to an amazing person, my friend, Erin Jeffreys Hodges who I respect so much.