Columns

For years, writing about women with hemophilia and other bleeding disorders has meant telling stories of delayed diagnoses, silent pain, and lives shaped by the absence of care. In many ways, it still does. But lately, I think something has shifted. The change has been gradual, and I don’t…

When I look back on the things my husband, Jared, and I did in our 20s, I sometimes wonder how we managed to get through them without more emotional or physical scars. We were young, impulsive, and convinced that nothing too serious could happen as long as we “managed things…

In my work as a hospice chaplain, I take the same routes when I drive to patients’ homes, assisted living facilities, or hospitals. Without thinking about changing lanes or adjusting my speed, my mind settles into autopilot, and I often arrive at my destination without realizing how far I’ve…

It’s finally happened: validation. The battle to get here was rough, but perseverance paid off. Seeing “Shellye, a patient with superior mesenteric artery syndrome (SMAS), presents for follow-up visit prior to surgical repair” written in my medical records made me want to cry. I felt the same way when…

When you live with a bleeding disorder, you get used to explaining yourself. You learn to walk into an emergency room ready with a treatment letter and a mental script of your medical history. You learn to minimize pain, explain bruises, fight for treatment, and reassure medical professionals that, yes,…

I rumbled around the house one evening, wrapped in my favorite oversized sweatshirt and cozy socks, the comfort like a warm embrace. I left my latest craft, hands marked with thread and bits of fabric, to refill my iced tea. As I made my way to the kitchen, I left…

It was the first rain of the season in 1978, and I was in kindergarten. Growing up in a low-income household meant that we were not always prepared, even when my parents wanted to be. I felt fortunate that my mom had a solution to keep my feet dry! She…

I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access…

I first met Connie Montgomery at the Hope Conference in Orlando, Florida, one of those rare moments when you instantly recognize a kindred spirit. Over lunch, we fell into deep conversation about women with bleeding disorders, the challenges we face, and the determination it takes to keep…

Moving is challenging. Moving means packing, having to decide what to keep and what not to keep, learning a new place, having to find a new grocery store, a new hair and nail salon, a new healthcare provider. Doing all that this time offered an opportunity to remember and…