Columns

Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…

My husband, Jared, was 11 when hemophilia changed the course of his life. He wasn’t doing anything reckless — just being a boy, jumping around on his bed. Then came the misstep, the fall, the blow to his head. He brushed it off, not realizing that a slow, dangerous…

After every storm, there’s a moment when you think the hard part is over. The winds calm, the skies clear, and you take that first deep breath of relief — only to realize the real work is just beginning: the cleanup, the repairs, and waiting for things to return to…

A columnist reflects on how a lifelong friendship taught her the value of “meeting halfway,” a lesson that later guided her advocacy while raising a son with severe hemophilia. When gaps in care emerged, collaboration and persistence became essential to securing the support he needed.

Several years ago, when I was checking some incisions about a week after I had a surgical procedure, I discovered gobs of red, gelatinous goo. No scabs had formed over the incisions like they were supposed to. I have hemophilia, so thankfully, I made it through the surgery safely,…

When people find out that my husband, Jared, has hemophilia and epilepsy, they often say things like, “You’re so strong,” or, “You’re such an inspiration.” He usually smiles politely, then tells me later, “I’m not special. This is just my normal.” That line…

During the National Conference for Women with Hemophilia and Rare Factor Deficiencies, held Oct. 3-5 in Detroit, I joined a standing-room-only session titled “More Than One Story: Exploring Joint Health in Hemophilia, Hypermobility, and Beyond.” It was refreshing to see hypermobility on the agenda — a topic that resonates…

I’m a hospice chaplain, and one day I was at the nurses’ station, completing my notes from a patient visit, when the fire alarm sounded. Startled, I turned to the nurse, who said the alarm had been going off all day due to a system glitch. The piercing, unrelenting sound…

I’ve lost count of how many times I’ve seen phrases like “victims of hemophilia” or “afflicted with hemophilia” in local news articles. Sometimes the phrase is “suffering from hemophilia.” To many readers, these words might sound sympathetic — even caring. But to those of us…

I recently helped a colleague with an exhibit at a fall festival. The venue was an assisted living facility, and we provided games and treats for the residents and children in the community. Our inflatable blue pool with colorful plastic fish made for a fun fishing expedition for all…