Columns

My sister got the worst haircut last week. It’s actually a good cut, just not the one she asked for. She showed the stylist a selfie taken on a good hair day, and said she only wanted a trim. But when she looked in the mirror for the reveal, she…

Every fall, our religious arts studio exhibits along with half a dozen other specialized vendors at a regional gathering of clergy. In flush times, we distributed gift bags, raffled off prizes, and sponsored happy hour, complete with a classical guitarist providing the entertainment. In lean times, we simply…

A few weeks ago, I received a question about a column in which I mentioned genetic testing. A woman with atypical hemolytic uremic syndrome (aHUS) asked for my advice about whether she should encourage her family members to get tested for the genetic marker. Suddenly, I was promoted from…

My husband, Ronald, and I hit the road years ago, chasing work, vistas — anything but another day in the office. Exciting? Sometimes. But in between the last sales meeting and the next roadside attraction were hours of highways and byways. Radio was local then and faded quickly as the…

As the spouse and caregiver of someone with atypical hemolytic uremic syndrome (aHUS), I am always conscious of the fact that living with a rare disease has affected both our overall lifestyle and the details of our days. But I also have noticed that it has had a profound effect…

Our phone call was winding down. “So, what else is new?” Mom and I asked each other. We used to have answers to this question. News, even. But for the past year and a half, nothing is new. Neither of us has gone anywhere, met anyone, or done much of…

Every happy wife thinks her husband is one in a million. However, I happen to know that mine is one in half a million. That’s not my opinion; it’s a medical fact. When he was diagnosed with aHUS five years ago, the doctor told us there were approximately 625…

Living with a rare disease creates a need for medical specialists. But a good general practitioner plays an important role, too. Rather than simple checkups, a patient with a chronic condition needs reality checks with a GP, while striving to live the healthiest life possible. And the physician needs to…

I am old enough to remember when punk rock first aired on the alternative radio station in Washington, D.C. In fact, I am so old, all stations were local then, and we listened to them on actual radios, not phones. Fast-forward 40 years: Johnny Rotten’s wife has dementia, and…

A brown masonry wall jutted out at a 90-degree angle just past the window in our hospital room. From his bedridden perspective, it was all my husband could see when he looked out. His days were measured by watching light bricks fade to dark. He noted with mild interest when…