Until I Say Good-Bye: My Year of Living with Joy

CR: You are a journalist. Has writing about ALS helped you deal with it? How in general has writing shaped you?

SS-W: As a journalist, I am a truth teller, no matter how uncomfortable it may be. There is no pretending. This helped me a great deal to recognize the reality of ALS. I have written thousands of stories as a newspaper reporter, which prepared me. One, because I've seen all kinds of tragedy in my career. I realized bad things happen to good people on quite a regular basis. And, two, because I knew how to distill events into stories. Writing is wonderful because it forces us to crystallize our jumbled thoughts via words.

CR: When it came to literally writing this book you faced some physical challenges. Can you tell us how you ended up writing the book?

SS-W: With ALS, the tiniest muscles fail first. Like the ones in your fingers. I was no longer able to type on a regular keyboard. I did not have the strength in my finger to press the keys. So I began on an iPad. Typing each letter on the touchscreen. Then my hand began to drag across the screen. Right about then, I landed a book deal, which was a tremendous incentive to improvise. I had always used the notes function on my iPhone to jot things down. Phrasing which came to me, grocery lists, or on trips, when getting out a laptop was not possible. I loved knowing that it was always there. I'd write anywhere and everywhere. As I waited for the children at music lessons, etc. I held the phone in my left hand. Propped it flat atop my curled fingers, and used my right thumb to type 89,000 words in four months. One letter at a time. Such is the power of desire. On the phone, I can only see 7 lines at a time. Which actually is a blessing. To hyperfocus on the sentence at hand. Active verbs. Few adjectives. I had an outline, a recipe, to create the book. An absolute must for a book, I believe. Bret Witter helped so with that. He saw the full picture, the book, when I saw only a tiny screen. He reminded me where I was at when I was absolutely awash in memories.

CR: You write about looking at life joyfully. Is that what you want readers to take away from this book—that even in rough situations they can experience great joy?

SS-W: Of course. I am not trying to be Dr. Phil, but I do hope it will inspire people to set their intention to do so. And make them feel lucky...

CR: Is that message especially important for your children to hear?

SS-W: Absolutely. I hope they learn "My ma did not feel sorry for herself. So neither will I."

CR: Many people with your diagnosis would either crawl into a cave or go from doctor to doctor trying to survive a little longer. You chose not to do that. Why?

SS-W: The problem with a cave is it has no windows. And the problem with knocking on umpteen doctor doors is there is nothing behind the door. There is no cure. Period. I'm realistic. A cure, a drug, won't come in time for me. I am not giving up. I am accepting. There is a difference. It was a chain reaction in my mind. I am not sure what set off what. Like an orchid lying fallow, neglected in my side yard, and one day a bloom appears. The factors were just there. Nature itself was a factor for me. Nature is so perfect. Photosynthesis. Pollination. Conception (Huge smile!). The monarch butterflies which migrate thousands of miles to Mexico to convene there. The rainforest canopy, where ants can fly so they don't fall to the ground. The laws of physics. That objects in motion have energy. I don't have the will or motion and, ergo, the energy to fight nature, beautiful nature. Also a major factor is my husband, John. I so want him to have a chance at another life. Not saddled with the weight of an invalid wife. Desire is root of all suffering, I believe. To want something you can't have. The cure is to not want it. I practice not wanting a cure, preparing to die. Choosing the path of least resistance. Going gracefully into the night.
What about your children??? People wonder.
Remember, they are MY children. I know what is best for them. I know that they are well-provided for. I know the love that surrounds them. I know the more gracefully I accept things, so too may they. I know they have my strength. I have not wavered once in these beliefs.

CR: Your therapy—travel—was not an easy one to accomplish. You had to go through tough things physically in order to see some of those faraway places. Were the trips worth the sometimes scary situations you found yourself in?

SS-W: Absolutely. I would not use the word "scary" though. We weren't swimming with sharks. When I was exhausted at the bottom of the stairs at Wreck Beach, I wasn't scared. More just worried. I adore traveling. So it was natural to go, not difficult to accomplish at all. But not without the help of John, Nancy and Steph. If they sound like saints in the book, that's cause they are saints.