Tales from the Bed

At thirty-five, Jenifer Estess is about to launch her own company. She is fit, dating with energy, and driving fast with the top down. She wants to fall in love and have a family. Then her legs begin to twitch, and walking a single city block leaves her exhausted.

Doctors first put the symptoms down to stress. Soon the diagnosis is ALS, a fatal disease with no treatment. One doctor suggests she run up her credit cards and see Paris. Jenifer chooses another course: she sets bigger goals, works harder, and holds tighter to family and friends.

This is a memoir, told by Jenifer herself. At its centre is a pact she made with her sisters Valerie and Meredith as girls, that nothing would break them apart. That promise carries the three through her illness.

It also leads them to found Project A.L.S. The organisation sets out to change how science and medicine approach research into ALS, Parkinson's and Alzheimer's, and has raised more than $18 million. The open question is whether the research can produce a medicine in time to help her.

The book looks at illness without surrender, and at what the idea of having it all means when time is short. It is a personal, family-centred account that moves between memory and the present, with hope and determination in the foreground.