I’ve been speaking with a new company about my book. (Check yourself, Laquisha, it’s very preliminary stuff.) We were getting into more of the details and answering questions like who will this book appeal to? Who will this not appeal to? What kind of patient reads a book like this?
And it got me thinking about…how I might come off to other people. The style of my blog, the tone of my writing—I’ve had a pretty positive response, but surely someone out there reading my blog must be thinking: this bitch.
I was reading through one of my chapters and trying to imagine what it would be like for me to have found this book ten years ago and what I would think of the fact that a writer could talk about my disease like it was a joke.
And I guess it’s pretty blatant, if you’ve read any of my articles, that, for the majority—I do consider my disease a joke.
It’s the kind of ironic, messy, impossible, where-is-the-exit joke where every new flare is a punch line.
Sometimes it’s a big balloon that almost crushes you with the shock of its weight. Sometimes it’s a series of small ones that hit you like a shower until you have the full breadth of time to wonder Okay—when is this going to stop!?
In the beginning you won’t find it funny.
You’ll be cold and wet.
You’ll find it impossible, and terrifying, and gut wrenching.
You’ll feel like everyone around you is infected by your misfortune. There isn’t a normal way to act around you. There are no words. There is no going back in time to position yourself away from the falling debris.
Then things will start to come at you. You’ve been hit by one water balloon and now every water balloon that ever existed in the entirety of plastic and the human race seems to want to hit you in the face.
You swear it looks like people waving at you from a distance are mouthing, “Have a great immune deficiency! Enjoy your cancer!”
Maybe this is what they call going crazy. After all the chaos you just look around and think what the fuck just happened to my life?
Why did it single me out? How special am I to have been hand-selected from the billions of people on this earth and given this disease? Couldn’t I have won the lottery? Couldn’t I have been a cashier at the grocery store? Couldn’t I have been Kate Middleton or have any other fate? Who wrote this script?
That’s when you start responding to the universe with a kind of bitter, “oh you think this is funny, do you?”
And then with a cold, wet, shock, you hear it shout back, “YEAH– KIND OF!”
The universe is sort of a big entity. You have to imagine it makes the biggest joke in existence. It asks, how much can we take—not before we crack (and we all will), but beyond that point: how long until we can pull ourselves together again?
Somehow, your skin gets thicker. When the balloons start pelting you, you keep walking. Does it hurt less? No. Does it make you any less wet or cold? No. Does it make you happy? God no.
But then there’s that moment where the barista puts real milk instead of soy milk in your frappucino and you go to the counter and ask him if he’s trying to kill you—because your colon has already made an attempt on your life this morning and your migraine isn’t scheduled till 3:30.
Every development in your health, good or bad, comes with a side of eye-rolling and of course I would lose the feeling on the left side of my body—because it’s not like I could have developed night vision as today’s mutation instead.
It’s not a religious positivity. It’s not a mindset of I just know I’m going to be cured of this. It’s not about never being scared.
It’s about screaming out, “YOU LITTLE SHIT!” after every water bomb hits you. And when people come forward to say they’re sorry about you being all wet and out here in the open—it’s about getting up close to them and shaking like a dog and saying,” me too, it’s highly contagious!” It’s about learning to laugh at the mishaps.
You don’t have to embrace your disease. You just have to know that every time we fall apart we’re just building better instructions on how to piece it all together again.
I laugh because I know from experience, but also from trust—that if I’m still here, heart beating, eventually I’ll dry off and start again. So why let the heaviness weigh me down? It’s all an interesting turn of events. Some days those events will involve liquid only dieting. Other days it’ll involve riding my bike for an hour without needing pain medication after.
To me, my disease is a poorly behaved five-year-old with a hose, a bag full of balloons and four gallons of Mountain Dew. I can’t always control it, but sometimes it does get a little amusing to watch it slip the rug out from underneath you (and other people around you.)
So, yeah, I see my disease as a joke.
I didn’t say it was a funny one.