On Saturday night I watched the just-released movie You’re Not You, starring Hilary Swank as a woman with ALS. Swank’s character, Kate, is 35 when the movie—and her disease—begins, and I wasn’t sure what to expect from a film that set out to tell a story that is so close to my own. Though I initially understood this to be a memoir, it is actually based on a novel written in 2007 by Michelle Wildgen. A very brief scouring of the Internet did not uncover Wildgen’s ALS connection or the source of her ability (or is it the screenwriters’ ability?) to so cleanly access many of the emotions and challenges that come with having this disease.

It was my story, at the same time that it wasn’t my story:

The pre-ALS life, full and fulfilling: check.

The initial symptoms, the confusion: check.

Fast forward to a husband helping with clothing: check.

The feelings of blame and guilt: check.

The comfort that comes from connecting with other ALS patients: check, check, check.

But… Read More>