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…
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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A decade later, I still remember standing in the kitchen on a phone call that would change my life. On that morning in March 2016, I left my apartment and returned nearly two weeks later with a pulmonary hypertension (PH) diagnosis. I never thought I’d reach this milestone: living…
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…
I often remark that being diagnosed with pulmonary hypertension is like walking into a “PHun house.” Open the door, and everything you’ll see in the mirrors will appear distorted, out of proportion, unfamiliar, and scary. Strange and uncomfortable things are happening inside our bodies that cause shortness of breath, fatigue,…
There’s a scene in Disney’s classic animated film “Aladdin” in which the evil sorcerer Jafar transforms into a snake and squeezes Aladdin within an inch of his life. As a kid, I found this scene rather frightening. As an adult living with a serious chronic illness and respiratory disease, I…
The hallway felt cold despite the extra blanket the transfer specialist gave me before moving me in my hospital bed. We headed to another wing of the building for yet another test. I waited in a dimly lit hallway for 45 minutes or so, counting the minutes, hours, and days…
“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while I was isolating in a California hotel room in January. I…
When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital for nearly two weeks and left with a pulmonary hypertension diagnosis.
The pandemic has been especially hard on people with disabilities, chronic illness, and rare diseases. Our community has faced ongoing ableist attitudes toward safety measures and protocols meant to keep disabled, immunocompromised, and other high-risk individuals protected from a pandemic with a death toll in the United States…
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