A Decade with Asthma: A Note to Myself
On April 28, 2018, I’ll be celebrating a decade with asthma. Yep, a decade. For the newly diagnosed among you, that will feel incredibly long; for those who already have multiple decades of asthma behind them, that will seem like a small portion of one’s existence. Simply, it is what it is. However, it’s no less of a thing to celebrate—and yes, it is a thing to celebrate, and look, I’ll take any reason I can to work a cupcake into my day (or no reason at all, let’s be honest).
To commemorate this milestone year, here’s a letter to myself. Ten years ago I was sixteen—three weeks from seventeen. And there’s no way I could have imagined how things would look a decade later.
How are you? Probably not so great right now. Yep, it sucks, and I remember it now, but it is your future self, and yes, like they say… it gets better. You’ll be able to breathe again better… eventually. I don’t want to say soon. It’ll be a few years, but you can get through it. Trust me, I am your future self. It sucks but it’ll eventually be fine, though you’ll probably never get over being angry about how long it takes to get treated properly. Actually, don’t ever get over that… that fire helps drive you to do some good things.
Next year, you’ll struggle through first term gym, and then somehow take a dance class. You’ll sit out quite a few classes because of your asthma, but you’ll push through. You’ll push through your breathing and un-coordination and confusion, and you’ll get a literal "A-for-effort." You’ll realize what you haven’t known your whole life: that physical activity, exercise, doesn’t have to suck. This realization in tandem with your asthma, will actually push you to study kinesiology in university. That’ll be hard for a bunch of other reasons, but you get through that too, a lot thanks to the self-advocacy skills you learn to deal with getting proper care for your asthma.
The important things aren’t what happens in the medical clinics, though. The important things happen when you share your story. You make friends—best friends who live across the continent and around the world. You travel to see them and you travel with them. You only talk about asthma when you need to with them, otherwise it’s an afterthought. You figure the asthma thing out with better doctors. You learn the science and the medical terms and asthma still confuses you because, hello, messed up lungs, but you know how to deal with it. And having friends who get it helps.
You’ll be frustrated a million times over. It won’t stop you.
Becoming an advocate, by accident
Your advocacy doesn’t stop at self-advocacy. You become an accidental advocate. Nine years in, you find yourself at Canada’s Parliament talking to Members of Parliament on the Hill. Ten years in, you’ll be on Capitol Hill, even though you’re not American. (By the way, your future future self is dealing with that so I don’t know yet how that went.) You’ll mentor kids with asthma online in a program called Asthma Pals, and you’ll learn just as much from them. You’ll find yourself on the radio a time or two talking about asthma—so far, you’ve managed to avoid TV (at least for asthma!).
You go to San Francisco and Palo Alto a bunch of times—to a conference at Stanford. Stanford is kind of a big deal, which your nineteen-year-old self won’t know, but it is. Medicine X shapes you in ways you’ll never imagine. You’ll find yourself in Quebec City, and Toronto, and Denver, and even Zurich, Switzerland because of this crazy disease. You’ll go to Philadelphia and DC and Vancouver. And you’ll still be amazed every freaking time because this is your life.
You will start writing about this journey, and you will not stop (even when you think you’re stopping, you’re not.) You will realize your story matters. You will realize that as your story evolves that the beginning still matters, but the new parts matter, too.
You won’t stop wanting things to get better. But that desire grows beyond yourself. It grows bigger than you know what to do with it. This negative will turn into a positive. Just keep going. Push through the sh*t, because that is how you grow.
You got this
You got this—even if you don’t get it now. Your lungs may suck, but your life won’t. It’ll probably be cooler. (Well, since I don’t know what happens if you didn’t get asthma, it’ll def be cooler.)
Which, I know, you can’t believe now. So, just keep wandering and you’ll get there. Because I’m still wandering, too.
"Just keep trying, just keep fighting, just keep going, just keep surviving.
Just keep walking, just keep breathing, just keep hoping, just keep believing."
And, to anyone reading this: you got this, too. It sucks, but trust the process—but don’t trust it too much, and don’t be scared to fight for what you need. You got that, too.
Do you get muscle cramps caused by your asthma medicine?