I am the child of holocaust survivors. Recently I’m hearing more about my mother’s life as a German Jew in hiding in Netherlands for her teen years. It strikes me as an empowered, engaged ePatient how our different life situations change the meaning of ePatient. In her case, survival was paramount, then boredom and fear. Isn’t that health? She tells about surgery for my grandfather on a kitchen table. Wasn’t she an ePatient? What I think of as health is very different. I am white, comfortable, loved, with little fear. I’m a worried well person with a chronic disease. I focus on other portions of the health continuum: meds, appointments, weight, diet, balance, stamina. My friend Cristin Lind’s blog Durgatoolbox dramatizes this lopsided continuum in her son’s care map. The similarity for each scenario is that best health is hugely more than medical institutions address. No matter how much I try, I can’t get my brain around what my mother experienced. I can’t get my brain around what Cristin and her family experience. Yet I can pull threads of understanding, empathy, compassion. Scents of our commonality. How do we share ourselves as we are ePatients? How can we help professionals on our teams pull those threads, whiff those scents?
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