How Much, How Little

From beloved writer and UC Santa Barbara professor Rachael King, a beautifully moving memoir of how her life was transformed in the wake of her husband’s ALS diagnosis, and how it galvanized her to search for a new vision of caregiving in America.

Rachael King thought she was headed toward a “normal” family life when she bought her first home on a tree-lined street of Santa Barbara with her husband, started a tenure-track position, and welcomed their first child. But everything changed when her husband, Ady Barkan, was diagnosed with the fatal degenerative disorder ALS.

As Ady threw himself into healthcare advocacy, becoming one of the most prominent voices in the country working alongside leaders like Bernie Sanders and AOC, Rachael fought to get a handle on her family’s rapidly transforming needs. As a member of the sandwich generation, she found herself like 1 in 5 Americans, stretched between two ends of the caregiving spectrum: parenting her children and caring for her partner. Eventually, they were able to hire in-home caregivers, many of whom would come to work with their family for years. Their presence allowed Ady to continue to live in his home, surrounded by his family, and modeled what a more communal approach to care could look like in our country. As Rachael tells it, this new arrangement saved their marriage.

In turns that are equal parts warm, heartbreaking, and often shot through with King’s deadpan humor, How Much, How Little tells the story of her life alongside Ady, intertwined with her own journey interrogating different modes of caregiving throughout history. Culminating in the final chapters in which King describes how she has found necessary community as a single mother, this book is a galvanizing argument for how we can radically reimagine care work in America.