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Appreciating Our Still Life With Houseplants

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…

Our Good Doctor’s Bold Statements

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…

I Miss Him While He’s Here

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…

5 Things Hospitalized Patients and Their Caregivers Want

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,…

No One Is Immune From Everyday Challenges

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…

Can You Keep a Secret?

Medications come with warning labels. Maybe rare diseases should, too. Warning: Atypical hemolytic uremic syndrome may cause secrecy in patients and caregivers. aHUS is a rare and life-threatening condition, and there are many reasons not to share a diagnosis or prognosis. Within the family, patients may want to shield loved…

Prayers + Life Lessons = Attitude Adjustment

The Serenity Prayer Most people know about the Serenity Prayer. It is a favorite among people with alcohol or drug addictions or those struggling to stop blaming themselves or others for the happenstance of life. Many people have memorized it: “God, grant me the serenity to accept the things…

Investigative Questions Are Essential to Caregiving

My husband’s general practitioner, hematologist, and nephrologist each care for the same number of patients with aHUS as I do: one. However, these doctors all handle a few hundred other cases with various ailments and concerns, whereas this is the entirety of my practice. Therefore, I am a specialist. I…

Caregiving and Convenience: If the Shoe Fits

One of the first casualties of taking on the role as my husband’s caregiver was high heels. That’s ironic, since he is the one who convinced me to wear them. From flats to heels Before we met, I always wore flats. It was sneakers and loafers on my own…