Columns

I recently dreamed that I was walking toward a hospital room to visit my son, Cullen. A doctor stopped and told me that Cullen had died. I walked away in a state of shock, but then quickly returned in tears and begged for a chance to see him. When I…

My mind once seemed wired to focus on parts of me I wish I could change. Most of my life, I struggled to accept my reflection in the mirror. I spent a lot of time hoping for the scars to fade and the fluid retention to dissipate. I tore…

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…

Stress was familiar to me long before my son Cullen was diagnosed with pulmonary arterial hypertension (PAH). Bruce Springsteen sings about being “Born to Run,” but when you run, you might trip. I was born to worry about things like that and so much more. Not that I…

The need for adaptation in my life began so quietly I often didn’t notice the accommodations I required. I started dancing at a young age, and at the end of each dance season, we had a big recital with different costumes for each performance. This created a problem when considering…

Let’s celebrate! Come on, y’all, join me. Now, are you curious what we’re celebrating? This week, I celebrate two years of writing my column, “Worth the PHight.” I’ve mentioned before that I started this column to offer hope to the pulmonary hypertension (PH) community. This is still true. And…

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…

Throughout my son Cullen’s pulmonary hypertension and heart-lung transplant journey, it has been my impression that hospitals try to treat the whole person — body, mind, and spirit. Over the past 13 years, he has been treated at four hospitals in two states, and each facility has offered chaplaincy…

I still remember sitting on the couch with my mom on the eve of my 15th birthday. We were talking about how old I was getting, and after a brief pause, she said softly, “Every year for you is a miracle, you know.” I don’t remember how I responded, but…

Do you find yourself scrolling through emails or multitasking when you sit down to rest? If you can’t seem to stop working or focusing on tasks, you are not alone. Our society has a troubling dilemma with overworking. Recently, I experienced an epiphany of sorts, and…

Nurses are remarkable people. My respect for them has grown significantly throughout my son’s pulmonary hypertension (PH) and transplant journey. Their job requires important skills, intelligence, patience, persuasiveness, compassion, energy, emotional control, a strong stomach — the list is endless. And I can’t think of a more suitable person to…

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…