Superpowers and Kryptonite
“What if I did a neb?” I said to Dia, as we discussed my weird asthma cough in the Palo Alto Sheraton, where we were roommates for Stanford Medicine X in September. The cough had been going on for like, two weeks at that point. My breathing otherwise felt mostly fine though, which was weird. “Would that be useful, maybe?"
There is nothing like, you know, trying to asthma problem solve with another person with asthma actually present. It’s kind of surreal, honestly, when you mostly talk on the phone to said person.
Dia agreed, assessing the rattly, somewhat gunky sounding nature of my cough. Moments later, after tossing a unit of medicine into the nebulizer and starting the breathing treatment, we realized the somewhat ironic nature of my t-shirt, at which point she took my phone and snapped some photos—including this very-posed (and now very-imperfectly-edited) one.
“Breathing is my super power”
The Frey Life - an organization raising money/awareness for cystic fibrosis. Also appropriate for asthma!
It might appear here that breathing is more my kryptonite than my super power. It might appear that the asthma is winning.
It’s not, though, because I choose not to let it.
That week I took my inhalers in 3 different airports (two of them two separate occasions), and in 6 different cities. That week I needed only one neb treatment, which is good for me in California in September (and seemingly unrelated to California this time, since the cough started before and persisted after). I didn’t need prednisone.
That week I sat on the beach in Santa Cruz with one of my best ever friends, walked the boardwalk, played arcade games, enjoyed Steve’s sister’s beautiful Santa Cruz beach house, ate pizza and ice cream with little abandon, wandered Palo Alto, and accumulated tens of thousands of steps in airports alone, never mind once I’d hit solid ground in California. That week I shared my journey with other patients, health care providers, health advocates, and, in general, people
Trying to learn how to work a fancy selfie stick with fellow asthma advocate (and best friend) Breathin’ Stephen in Santa Cruz, CA, near his sister’s beach house.
Asthma is a part of my story, and that’s not by choice. Sometimes it is a bigger part than others. Soon after my diagnosis, though, i chose to allow asthma to be a starting point for me, not an ending one. This trip to California—like many other adventures I’ve been fortunate to have—came not solely because of asthma, but because I made a cognizant choice to choose how I responded to my diagnosis, and to live my life the way I do. With asthma. In spite of asthma. Even if that means a packing cube of inhalers and prednisone and a nebulizer in my backpack, I choose what I do with asthma along for the ride.
It’s about letting my messed up lungs become the start of something better. Why do I do this? Because “I can’t be satisfied with okay, and I can’t be okay with alright”. 1 At no place is this more apparent than at a healthcare conference, surrounded by health advocates. However, this is just a part of me, everywhere—my asthma, and my desire to do something better: my desire to create change.
Those experiences though, these adventures, they become all that they were and are because of so much more than just asthma. They are what they are because of who I am, because of who I make the choice to be—how I choose to see my circumstances. And, sometimes most importantly, because of the people I both chose to share that time and those adventures with, and the people who I intersect with along the way.
It’s about choosing for my messed up lungs to be the start of something better. It’s that, perhaps, my kryptonite could also be what connects me to my superpower.
Have you ever gotten "moon face" as a side effect of prednisone?