Columns

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…

We got the official letter last week. The brilliant nephrologist who saved my husband’s life will no longer see patients at the local office. He told us at the last appointment that this was coming. It’s a good thing for his career, and we are happy for him. He…

Almost a century has passed since the Carter Family recorded their classic country song, “Will You Miss Me When I’m Gone?” Like any good Appalachian ballad, it is an ominous and mournful melody of life and death, love and loneliness. These concepts are presented as simply and distinctly as…

Spoiler alert: It is not flowers and balloons. A couple of weeks into our stint in the critical care unit due to my husband’s aHUS, a surprise visit from my sister showed me the value of little things and great thoughtfulness. While my husband, Ronald, struggled to simply live,…

Celebrities seem to have it all. Their lives look so easy and enviable. We watch them sing, dance, act, and then share a laugh with late-night talk-show hosts. Their albums, shows, and movies make millions. They wear designer clothes and their hair is perfect. We often assume these beautiful people…