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…
PHighting Words - a Column by Mike Naple
It turns out that National Cat Herders Day is an occasion people celebrate. Observed on Dec. 15, it’s a day to recognize people who achieve the impossible as part of their jobs or positions, and do work that requires incredible feats of willpower and organization, and a…
The tightness creeps up in my lungs just as I’m about to make up the bed with a second clean sheet. I pause to catch my breath and wonder how unfolding a piece of fabric can make me feel like I just sprinted up a flight of stairs.
Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH). This caught me a bit off guard. I had gotten to know this particular doctor over the last 20…
I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me. Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins with the advocates and the storytellers who share their lived experience…
I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down to make time for myself. Being on all the time fills…
What is better than the smell and taste of a freshly brewed cup of coffee? Maybe a second cup of coffee? Maybe like me, you find comfort in the simple routine of your morning coffee before work, school, taking care of a loved one, or whatever is on your to-do…
Have you ever seen the view from the top of the Lincoln Memorial in Washington, D.C.? Maybe you saw the monument during a family or school trip, or perhaps a visit to the National Mall is still on your bucket list? Living in D.C., I sometimes forget how close the…
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…
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…
