I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a connection inside me to disability as part of my identity — one I felt had been…
PHighting Words — Mike Naple
Mike Naple (he/him) lives in Washington, D.C., but calls San Diego, California, home. Mike was diagnosed with pulmonary hypertension in 2016. He also manages living with interstitial lung disease, sleep apnea, scoliosis, and a stutter. These chronic conditions are mostly invisible except for when Mike uses oxygen therapy while engaged in rigor exercise or activity. Mike is a public affairs and communications professional who still works full time. He is excited for readers to join him as he navigates the intersections of disability, chronic illness, rare disease, public policy advocacy, and living with PH.
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When did you last speak to somebody on the phone? I don’t mean communication via email, text messages, Slack, Signal, Instagram, or other digital platforms. People today tend to opt for the more casual text- or chat-based connections. I imagine, though, that if you have pulmonary hypertension (PH) or…
Deck the pool chairs. Fire up those outdoor grills and Hallmark movies, because we’re celebrating Christmas in July! You might view this as an odd way to start a column, especially considering the extreme heat many of us just sweltered through across the U.S. But for me, it’s a…
Living with a chronic illness or rare disease definitely comes with a price tag. There are added expenses related to medical equipment and devices, doctors’ appointments, tests and procedures, and of course, the cost of prescription drugs, which can really pile up month after month. I remember feeling incredibly frustrated…
Pride Month, observed each June, is a time to celebrate LGBTQ history, community, and life through events and parades. Curiously enough, I marched in my first Pride parade years before I had the courage to come out and live authentically. While I think about that experience in San Francisco…
We’re taught to climb ladders. When I played Chutes and Ladders as a kid, I always wanted to land on a ladder because it meant advancement — one step closer to the finish line. Students move up rung by rung from preschool to high school…
“Where do you see yourself in five years?” This is one of my least favorite questions during job interviews, and I hated it even more when I would catch myself lobbing it at prospective co-workers. Oddly enough, if somebody had asked me that question five…
Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members of my family cannot always see it. Every day I work with and walk among healthy…
Are you a Grover or a Bert? A Cookie Monster or a Kermit the Frog? You’re probably wondering what Muppets have to do with my journey living with PH. Stay with me. I recently discovered the Muppet Theory, thanks to a colleague who recently asked me if I…
In June, I attended my first Pulmonary Hypertension Association Conference in Orlando, Florida. Sitting in a packed ballroom full of strangers, I had never felt more seen. Many of the faces around me were fellow PHighters, and we were all there for the same reason. I left…
“Do you wear glasses?” The question took me completely off guard. I was standing in line at my local breakfast spot and staring the cashier in the face, wondering if I did, in fact, have glasses on. The cashier pointed at two lines under my eyes that one…
I’ve been quiet in this space for longer than I intended to be. Call it writer’s block or an exceedingly busy work schedule or no particular reason, really. I just didn’t put fingers to the keyboard in a way that produced any writing worthy of sharing with the…
“It’s about the journey, not the destination,” is an oft-quoted phrase that is meant to remind us to be in the present and savor the special moments along the way, instead of being preoccupied with that next destination. This saying takes me back to my high school English…
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