Diagnosed with ALS (Lou Gehrig’s Disease) in 2011, journalist Susan Spencer-Wendel knew she would have to write about her experiences sooner rather than later. The problem: ALS had advanced to a stage at which she could no longer type on a keyboard. But she produced a memoir of one amazing year, Until I Say Goodbye: My Year of Living with Joy to be released on March 13 by Harper, with a film adaptation and many translations for foreign markets already in the works. Susan and co-author Bret Witter discuss the circumstances behind this inspirational book.

Bret, how did you come to be involved in Susan’s book, and what role did you have in its writing?

BW: Our agent, Peter McGuigan, showed me two articles Susan had written for the Palm Beach Post about her travels since being diagnosed with ALS. They were wise and beautiful. I loved them, and I loved her. I think we were all on the phone together about an hour later, and shortly after Susan asked me to help her with her book. That is an extraordinary thing about Susan: she is so comfortable asking for help. She could have done the book herself, but she felt it would be better with someone to help her. She was always confident it would get done. When I met her for the first time, a few days after we sold the proposal, I wasn’t so sure. I knew she was sick, but I didn’t know how sick. She couldn’t lift a glass of water or move a ticklish hair from her face. She was typing with one finger on her iPhone, since the other nine no longer worked.

This isn’t a book where Susan thought, “I’ll live with joy for a year and write about it.” She lived with joy, then started writing at the end of the year, after her voice was so weak she could no longer share her thoughts with her children. I thought: “This might be impossible,” but Susan started writing that day and continued every day for four months. My job was to take the 1500 words she wrote each day and make sure they became a book. Not advice, but a true story with characters and a narrative. As Susan said once, I kept rearranging the furniture.

Susan, when did you decide this book needed to be written?

SSW: I don’t know a journalist who doesn’t walk around with at least the notion of writing a book in his head. I had always thought I would write the story of my birth parents for my children as they were too young when it all happened to understand. My parents, the mother and father who raised me, had long ago asked me not to tell my children so as not to confuse them. I respected their wishes, but then I got sick and knew the fascination with their story would die with me.

To what extent do your children understand what is happening and why you’ve written this book?

SSW: They are children. In their world, I am simply their mom. Sick or not sick. They understand I have ALS. They understand most people with it die. We don’t dwell on it. We dwell on homework, concerts, on keeping life as ordinary as possible for them. The book is my forever gift to them for when they are older.

My highest hope is that the book will raise ALS from an orphan disease to one the public stops and thinks: It has been 72 years since Lou Gehrig died and there’s still no cure. Time to get it done!

You talk of how becoming a parent put an end to traveling, but the past year, you’ve taken so many beautiful trips with the people you love, though it caused the progression of ALS to accelerate. Do you have plans to continue traveling as long as you can?

SSW: I currently have one trip planned in April: we will go to the Florida Keys to a home on a canal where manatees congregate. They swim right up and a drink from a garden hose. I am hells bells that I am getting in the water with them! Also, I am taking a flower arranging course; something I always wanted to do. John, my super sport husband, will go with me and be my hands. In the meantime my body and voice become weaker daily, but my mind becomes mightier and more quiet. You do indeed hear more in silence.