The film 'The Diving Bell and the Butterfly,' based the book of the same name, has a line that enlightens and comforts me. The protagonist, who has lost all ability to move except one eye, discusses his role as a father. He notes, 'Even a fraction of a father is still a father.'

Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.

A terminal diagnosis can really mess with your head. Honestly, it makes you want to run away to the moon. Many ALS patients want to fade away quietly. This was not for me.

Steve Gleason Quotes