Video production: John Rosman, Julie Sabatier

Above all else, Summer Whisman is a storyteller. She has always loved meeting new people and learning about their lives, as well as sharing stories from her own experience. After she was diagnosed with amyotrophic lateral sclerosis (ALS) three years ago a few months before her 33rd birthday, she decided to write a memoir. The unpublished manuscript chronicles her first symptoms and eventual diagnosis with ALS, as well as her life before that teaching English in Sapporo, Japan, and waiting tables in Colorado, where she went to school. At the very beginning of the book, Whisman writes:

I must warn you: just because there happens to be an incurable and fatal illness in the title of this book, it does not mean the following pages have been produced to inspire you and make you cry. These sentences are meant to entertain, make you laugh (I hope) and provide you a glimpse into the world of Amyotrophic Lateral Sclerosis (ALS). If you are seeking detailed guidelines to overcome adversity and learn how to face challenges gracefully, I’m not sure you’ll find what you need.

The prologue captures Whisman’s attitude towards her tragic situation — unflinching, realistic, and somehow imbued with a sense of humor.

This is part of our “At Home” series.


  • Summer Whisman
  • Dave Whisman
  • Jody Weinstein