Two weeks ago I started an empty document called “What nobody sees”, about the invisible nature of asthma—about the things we do quietly, invisibly. What I didn’t know about that at the time, was a week and a half later I’d be finding myself in the Stanford Health Care Emergency Department for blurred vision with Dia at my side (we were at a patient engagement in continuing medical education workshop when this happened, of all places, and got driven over in a golf cart, of all things, from the Stanford Engineering building to the hospital), and a week after that I’d be back at this document, from a whole different angle (and with blurry eyes).
Most of the aspects of asthma are invisible
Just like nobody can see my still blurry vision—a week later, I finally was able to see my optometrist about it, and he still saw nothing and my prescription is the same (?!)—nobody can see my asthma. Maybe it’s audible when I cough or sound out of breath, or visible when an inhaler pokes out of my pocket, but otherwise, it’s invisible. Nobody sees the questions in my head, the uncertainty about what I’m going to feel like tomorrow, the thoughts that tumble through my head when I smell cigarette smoke at the bus stop, or perfume in the mall, or when I go to someone’s house for the first time and wonder what triggers are possibly hiding within, from air fresheners, to their hand soap—for others, these questions likely include pets or plants. Nobody sees the effort we put in to stay healthy, or the thoughts we have when we’re teetering on the edge of an asthma flare, or when we’ve been stuck in one for a few days. Nobody sees how exhausting just the thought process can be.
I choose to appear healthy
The reason that nobody sees this is, is partly the nature of asthma, and partly a choice: I choose to appear as healthy, as “normal”, as possible. I choose to not let the perceptions of my illness—my perceptions or others’— change what I do or how I live my life. But there is still a part of asthma that nobody sees. And you know what? It’s still not all bad. Because for years, part of my asthma anybody saw was my online friends with asthma; my blog posts and ramblings; my questions and thoughts. These things are now a core to who I am, but for years, I kept them hidden away.
And now I draw this to a parallel to the current state of my eyes. Nobody can see that they’re screwed up. Even when the emergency department looked inside them, everything seemed fine. Like the many people walking around with undiagnosed eye issues, not seeing the world as clearly as they could be, I am just another one of them. Except, oddly, hidden away in my arsenal of tricks is ways to make that easier, too. Because when reading is hard, I can flip VoiceOver on using my iPhone, iPad, or MacBook—tips learned from my blind friends, who navigate with no sight at all. When needing to read documents for an event Monday, I e-mailed ahead and asked for electronic versions just in case—no different than I sometimes make the request for hotels to avoid fragrances in my room prior to my stay. And, while he was probably half joking, I had a friend offer me his too short mobility cane—just like Dia offered to help me navigate to the emergency department bathroom (a nice gesture, though not necessary).
What nobody sees is why it’s so important to be open to the experiences of those around us. Because no, we may not have identical asthma experiences—nobody does—or experiences that can even somewhat parallel another person’s. It’s important to be open so that we can maybe learn just a bit more about what nobody sees in other people’s lives, so that they’ll be more receptive about learning what nobody sees in our own worlds.