It’s the season of giving, and I’m thinking an awful lot about the precious gift of time. During a recent interview on the “Today” show to discuss his departure from hosting “The Daily Show,” comedian Trevor Noah said, “Time is the one thing we cannot increase … so…
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 it comes to scheduling appointments, I say the earlier the better. I love first-thing-in-the-morning physical therapy sessions. The commute is quieter, as my neighborhood and city are still waking up, and the late-summer heat hasn’t yet turned the concrete into hot stones. There’s a sense of accomplishment in finishing…
I’m like a boxer barely holding on in the 11th round, just waiting to hear the bell in the final quarter of 2022. These days, this PHighter is relieved to still be in the ring. While doomscrolling through Twitter recently, I saw a prompt posted on the Pulmonary Hypertension…
New research shows an increase in pulmonary hypertension (PH) mortality rates, and we must respond with the force of a dazzle of stampeding zebras. The study, “Pulmonary hypertension mortality trends in United States 1999-2019,” published in the Annals of Epidemiology and the topic of a recent Pulmonary…
I hate communicating with automated phone systems. I hate that advancing to the next stage of the process to get what I need depends on how the automated program understands the sound of my voice and the cadence of my words. I hate the way I feel when the stutter…
Before I could process the sharp sound, people were already sprinting onto the field. I watched in disbelief as spectators jumped over the railings while players scrambled to bring fans off the field into the safety of the dugout. As the chaos unfolded and more people reacted with fear at…
As we trade swimsuits for sweaters in preparation for the fall season, many of us look forward to the premiere of new television shows and the return of our old favorites. Growing up, I would devour entertainment magazines dedicated to previewing the fall television and film lineups like popcorn. I…
A yellow raincoat hangs in an office window on the same floor as my office. The full-length coat with simple, black buttons looks as though its fibers have never absorbed a single drop of rain. I first noticed it almost a year ago, when my company moved to a new…
School might already be in session for students in some classrooms across the country, but summer recess for members of Congress is just heating up! Every August, members of Congress leave the sweltering swamp of Washington to spend time in their home districts meeting with constituents, advocacy groups, and other…
“This is humiliating,” I said to the security agent waiting for his colleague to arrive to run a test on my portable oxygen concentrator. The agent asked if I wanted to continue the screening in a private room. Unsure of how many people might be looking in my direction, I…
Before my diagnosis, pulmonary hypertension (PH) was a mystery to me. I’d never met anybody who had the disease. Sometimes finding another person with PH is just as rare as the progressive disease itself. That’s exactly why I went to Atlanta last month to attend the International…
I’ve come out a few times in my life. I came out regarding my sexuality as a member of the LGBTQ community. I’ve also come out as a disabled and chronically ill individual and a member of the pulmonary hypertension (PH) community. Coming out is a deeply personal experience.
When somebody asked me how I was feeling a few weeks ago, I responded, “Well, I feel like Stretch Armstrong being pulled in too many directions.” Do you remember the action figure toy Stretch Armstrong? You might need to stretch your memory back to your childhood to visualize this…
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