The "Asthmaversary": Contemplations on Year Nine
Another year has passed: it’s April 28, and 9 years ago today, I was told I might have asthma. This brings me to my first complication of when to “celebrate” my “asthmaversary”—do I celebrate it on April 28, the day I was prescribed my first Ventolin inhaler and told I might have asthma by a walk in clinic doctor? Do I commemorate it on February 15, the day I started having asthma symptoms? What about October 31, Halloween Day, the day I finally was prescribed a controller medicine, FloVent, to manage my asthma symptoms better?
It’s true, that like the first 100 days of a presidency—April 29, or tomorrow, as I write this—these dates are all arbitrary. And most people diagnosed with asthma young likely don’t even know when their “asthmaversary” is. But sometimes, it feels important to know—important to recognize where you started and actually see where you are now in comparison. To see that, though slow, you have made progress. To see that the time ticks by and you can do this because you’ve been doing it for this long. For me, this is year nine. Nothing spectacular or momentous, just somewhere around 3,287 days have passed that I’ve learned, grown, owned this thing, and discovered how asthma “helps explain me but doesn’t define me”.
What have I learned in nine years? So much, yet an amount that does not even scratch the surface. I’m lucky that my asthma diagnosis has brought me a lot of good—I realize that this isn’t really the norm. I’ve accumulated dozens of friends, a handful of people who fall into the “best friends” category because of asthma. I’ve travelled, found myself on Stanford’s beautiful campus as an ePatient Scholar at MedicineX, and presented at Stanford MedicineX | ED. I’ve found myself in Quebec City for the World Congress of Asthma having coffee with researchers at 7 AM, and in fancy Hyatt lounge rooms with free food and drinks with another researcher while in Denver for the American Thoracic Society (ATS) Conference (Dia and I tried to sneak in and didn’t get too far). My name will be on a poster presentation at ATS 2017. And I’m, weirdly, a freelance writer focusing on health topics, specifically, my own asthma (and ADHD) experiences. I did not expect any of this stuff to happen, but the truth is, by engaging and not wanting to settle, this is something that I made happen. As the sign that used to hang in the school I worked in said “Good things happen to people who try."
I told Dia about a month ago that I identify with this Matthew Good song lyric so much. Many won’t believe me, but it’s kinda true. And it is this:
“I’ve become spectacular,
Which is strange ‘cause I feel dumb."
—Matthew Good, Carmelina
Okay, and I’ll be honest, I don’t feel dumb all of the time. Although I am confused about 99% of the time for one reason or another! But even being at this—at asthma—for 9 years, and being as knowledge hungry as I have been for most of that time, I’ve barely scratched the surface. The reality is, I want people in the asthma world—the world in general—to be smarter than me, so that I can keep learning from them. Because you know what? Nine years in, I want more than ever to see the world of asthma change. I want to understand what will make it change, and why it isn’t changing.
So even with an incurable disease, yeah, I’m lucky. I’m lucky I do what I do partly because of, and partly in spite of asthma. I’ve had weird and wild and amazing experiences because of asthma. Maybe I have “become spectacular” to an extent. Maybe I’m living the kind of life that I never thought I would; but one that I love. And yeah, I’ve had people tell me they’re jealous of this crazy life. Maybe spectacular is the right term for it.
Have you ever gotten "moon face" as a side effect of prednisone?