*Books won’t actually physically cure you of a disease.
“We tell ourselves stories in order to live.” – Joan Didion
I have kind of a love/hate relationship with books about illnesses. I flock to them like a seagull flocks to a McDonald’s parking lot, but most of the time I come away feeling disappointed, probably also like a seagull in a McDonald’s parking lot. I’ve realized that I don’t want to pick up a book about understanding my lupus, filled with medical terminology and chapters of scary stats about how bad the prognosis can get. No thanks. And I’m not really the target audience for those books that promise a healthy attitude will cure you. I’m just not into books packed full of so much optimism that a ray of light beams straight from the cover into my forehead as I stand over it and browse through the pages in a bookstore. No, not everything is sunny and fine. Yes, I know others have it worse. But how is that supposed to truly make me feel better? That’s just something we say in passing to acquaintances to give an illusion of acceptance about our failing bodies. “Oh it could be worse” is said at dinner parties to people you run into twice a year who have a morbid obsession with knowing how you’ve been holding up. “Oh it could be worse” is never something we actually say in the privacy of our own minds with no prying ears around to accuse us of self-centeredness or the even worse infraction of not stacking our thing up against someone else’s thing to see which one is heavier or taller or whatever terms of measurement you want to use. That also reminds me of the saying “well, everyone has their thing.” This is very true. We all have something. But I can promise you that I don’t remind myself of that on the nights I am laying on the bathroom floor throwing up all of the day’s food, pain-wracked and hungry. I don’t whisper to myself between each insertion of my head in the toilet bowl, “this doesn’t really matter because everyone has their thing.” Or even worse, “this is just my cross to bear.” Nope. That’s just a thing we say because it’s expected of us to be said. We have to seem heroic in our battle because if we aren’t then what does that make us? The enemy? The villain? The person nobody is rooting for?
So I don’t want to open my books and find those empty lines inside of them. I want a happy medium. I want to read a human reaction to being sick, which is generally a mixture of good and bad. I want to go into a bookstore when I’m feeling a bit lost and hopeless and find a book that is a book but is also a mirror. I want to find the words that make me nod along to the sentences and mumble some affirmative “mm hmms” as I turn the pages.
I want someone to tell it to me straight. Because that’s how you live your life. You don’t get the pleasure of sugar coating your own illness for yourself. That’s something you do for loved ones so they don’t die from shock when you tell them how sick you actually are. You’re in it. You’re living it. There are no bumper guards or sheets of bubble wrap to keep you a safe distance from it. It’s your head in the toilet. And I want that in a book. I want to peel back a cover and see something like “You know what? It’s truly a load of crap that you got sick. It sucks. But you’re still here. And that’s really something, when you think of it.”
You want that first page to drag you in. You want to see your experience right there in front of you, in a real live book that other human beings will also read. And it’s probably because your story, as you tell it, as you live it and have to explain it over and over to each new friend, lover, nurse, doctor, therapist, is almost never believed. At least one aspect of it will be doubted. There can’t be that much pain. There couldn’t have been that much swelling. Your breathing surely wasn’t that shallow. Your tears certainly couldn’t have lasted that long. It couldn’t have changed your life that drastically. Surely it isn’t that bad if we can’t see it. So you want it written, in black and white, that someone else was sick and maybe even dying, and that someone else was dismissed for being hysterical. Diagnosis? Being a woman. When really it was lupus or MS or cancer or something else really evil. If you see your story there, in actual written word, ink on a page that was bound by a professional, then that makes your story all the more valid. Because we all know a woman’s lived experience isn’t valid or trusted until she can present the jury with some corroborating testimony. These books and stories become our evidence. And that realization is enough to make anyone sick.
So I walk into a bookstore looking for a book about someone who is also sick. I look for it the way a lost child looks for her mother through the grocery store aisles. I’m desperate for something familiar to cling to; my very own safety raft. I’m looking for that book so that I can buy it, read it, pile it up on top of the others to build some sort of support beam. I’m looking to build a mountain of these stories that I can point to when I’m just too tired to keep telling mine over and over. I want to point and say “there – read those. That’s proof that what I feel is real.” I will also add that it certainly doesn’t hurt if that mountain also has some pebbles of humour mixed into the other mountain-contents (I don’t know much about geology).
And that’s a lot to expect from a book, but I’m hoping my story can be added to that pile. Which is why I’m writing a book (and nearly finished)!
I’m focusing on the book a bit more than the blog these days, but I think for good reasons. Writing this book gives me a very real hope for the future. I want my story to help other people in situations similar to mine, and I also want it to be a way to bridge a gap of understanding between healthy people and sick people. I’m hoping by sharing my stories and some humour about illness it won’t be a scary unknown that has to be tip-toed around forever.
I hope when it’s done it can help somebody the way a very select few books have helped me. If you want some homework and haven’t read my previous blog posts about book recommendations you should check out these books:
Furiously Happy by Jenny Lawson
You Are Here by Jenny Lawson
I’m Just a Person by Tig Notaro
This is How: Help for the Self by Augusten Burroughs
The White Album by Joan Didion