How Life Changes

First You Make a Map

One night in graduate school, a writing teacher gave our workshop this simple advice, when presented with a room full of overwhelm about plot and structure. As novice writers, sticking to the most basic chronological storytelling, we were asking for a slick shortcut to making things more complicated. Our leader went to the chalk board and created a hypothetical flow chart of circles and arrows, connecting dots from character to setting to place and time. It was simple, she said.  “First you make a map.” For the past ten years or more, I’ve been intermittently working on a novel that…

Denial

Is a river, as the cliche goes. But denial in health care settings is a particularly turbulent river. What do we say or do when a patient presents in a complex, difficult way? How can we make these conversations meaningful, empathetic and fundamentally truthful? For the past two days I have cared for a patient in my unit who is 100% medically stable, ready to go home from the standpoint of the health care team. However, he is confused, combative, unable to care for himself, refusing medication, weak, a fall risk, nowhere near his baseline when it comes to mentation…

Welcome Back

For many years I kept a blog, Speak Softly, that recorded (among other stories), my everyday life as the mother of a son with special needs. I also wrote a monthly column for Literary Mama, Special Needs Mama, that reached a wide audience of parents, educators and special needs advocates. In between, I published a memoir, This Lovely Life – a book that won prizes and put into words my family’s experience after I gave birth to extremely premature twins, only to have our daughter die at birth and our son survive to be that same multiply disabled boy who…