Note: This column describes the author’s experiences with BeneFix (coagulation factor IX). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I expected factor to help a bleed. I didn’t expect it to change what my back could do. For months,…
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Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe.
Back-to-school season has always been one of my favorite times of the year. Walking through aisles full of pencils, erasers, spiral notebooks, and colored pens takes me back to my elementary school days. I especially loved choosing a big pack of construction paper. Opening a new package, breathing in the…
The scream echoed through our house, loud enough to rattle the windows. For a moment, I wondered what the neighbors must have thought. My husband and I were walking up the stairs when he accidentally scraped his hand against the railing. It wasn’t a particularly hard hit. Most people probably…
Artificial intelligence (AI) in healthcare? You’ve got to be kidding me! What a ridiculous idea! That sounds horrifying. We don’t want computers diagnosing us; we want trained, experienced professionals who can think for themselves. As someone with hemophilia, I felt this way. Strongly. Until last week. As I’ve mentioned…
Most mornings, before the day can get its hands on me, I do exercises for my spine. They are not impressive. No one would film them. They are slow, deliberate movements on a mat, the kind of thing that looks like nothing and costs more than it looks. Bracing. Holding.
My youngest son, Caeleb, is working this summer as an office intern at St. Paul’s United Methodist Church in Las Cruces, New Mexico, where I serve as pastor. Even though I am his father, “MacDonald the Younger” does not report to me. He reports to the business manager. That boundary…
Many people believe that if a disability or struggle is not visible, it must not be real. I learned this lesson firsthand as I watched my son Caeleb live with severe hemophilia A and its lasting effects. His challenges are not always obvious to others, but they affect nearly every…
Someone recently told me they thought they were experiencing arrival fallacy. I’d heard the term before. It describes the feeling of reaching a long-awaited goal, only to discover that it doesn’t bring the lasting happiness you imagined. After the excitement fades, life feels surprisingly ordinary again. Before long, a new…
For most of my life, “tired” was the only word I had, and it was never enough. I’d say it to doctors the way you’d mention the weather — a fact so ordinary it wasn’t worth writing down. And mostly, it wasn’t. Tired was normal. Heavy periods were normal. Being…
