From ‘YOLO’ to ‘FOMO’: The Fear of Missing Out
YOLO, aka, “You only live once.” For much of my late teens and early 20s, almost everyone I knew lived by this motto. It was a way for us to justify our rebellious behavior, and for me, it was a way to…
Columns
Raising Awareness: What Does a PHighter Look Like?
“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…
Staying Healthy While Traveling with Transplanted Organs
For the first couple months of my recovery from a heart-lung transplant, I had a one-hour radius from the hospital. A woman I met in a waiting room assured me that eventually, I would be able to travel internationally. “They just load you…
Time Spent on Self-care Is Never Wasted
Going with the flow and finding balance in life often seem impossible with a chronic illness. I wish I had the luxury to release control to the day. I wish I could just pack a bag for a spontaneous road trip, head out with…
A Legacy that Reminds Us of the Importance of Organ Donation
April is National Donate Life Month, a chance to celebrate those who have saved lives through organ donation. Not everyone can be an organ donor — most people won’t be — but everyone can inspire organ donor registration. Rebecca Joy Butler’s legacy…
Wearing Oxygen Has Taught Me the Lessons I Needed to Learn
*** “Just when we think we figured things out, the universe throws us a curveball. So, we have to improvise. We find happiness in unexpected places. We find ourselves back to the things that matter the most. The universe is funny that way.
Reminders that Help Me Get Through the Difficult Days
With pulmonary hypertension, I have been through a variety of difficult days, including days when I feel I can’t fight this disease anymore. They are the days that make me question my own physical and mental strength. On these days, I think to myself, “How…
Spending a Holiday in a Hospital Bed and other Spring Reflections
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…
The Bucket List I Refuse to Make
During my senior year of high school, a teacher assigned the task of creating a “bucket list.” I was furious. A term popularized by the 2007 movie of the same name, a bucket list is a list of things one wants to do before dying —…
Camille Frede Receives a Long-awaited Heart-lung Transplant
On Sunday, one of my longest friends with pulmonary hypertension received a heart-lung transplant. I met Camille at the first PH Conference I attended in 2000. I was 6 and she was 10, so it was a big deal that she even talked to me, let alone befriended…
Managing Chronic Illness Taught Me that Vulnerability Is a Sign of Bravery
For most of my life, “being brave” meant that I had to be tough. For me, this looked like hiding my true feelings with a smile, fighting tears when experiencing pain, learning to just live with the physical feelings I was experiencing, and complaining only when…
What ‘Sick’ Looks Like: My Many Faces of Chronic Illness
“At least you don’t look sick.” I’ve heard this comment before — meant as a compliment, I’m sure. As if saying “you don’t look sick” is a good thing. As if it makes up for feeling like I got hit over the head…
