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When you're married to someone for 21 years, working to raise three children, each holding down full-time jobs, you run the risk of, to quote my wife, becoming like pieces of furniture to each other.
So when Susan was diagnosed with Amyotrophic Lateral Sclerosis (ALS), known as Lou Gehrig's Disease, at the age of 44, her decisions about how to live and die just seemed natural to me. Within an hour of her diagnosis, as she sat in a Burger King parking lot while I (quietly devastated) wolfed down a Whopper inside, Susan's mind was made up. The first piece Susan wrote was about her trip to the Yukon with her best friend Nancy to see the Northern Lights. Nobody knew that she'd written the Budapest article on her iPhone, using the Notes app, because she was too weak to depress the keys on a computer or move her fingers across an iPad.
Then one day I came home to find the patio lined with new teak sofas, chairs, and a coffee table. The chickie hut is the place where Susan took the phone call from a literary agent who had read her articles. Susan's approach to her plight isn't the typical American response to a terminal diagnosis.
So sure, Susan may be my comfortable chair, but that just means there's no place in the world I'd rather be.


We were scratching out a middle class existence -- chasing kids and dollars -- and we were each other's easy chair. ALS is a fatal, incurable motor neuron disease that causes its victims' voluntary muscles to gradually weaken until they are paralyzed. She had worked there for two decades, with a reputation for being a determined and conscientious reporter.
They didn't see how each morning I would situate her on the back patio with her phone, and there she would sit for hours, simmering in the Florida sun, tapping away with her right thumb, the only digit she could still move.
If I'm gonna have to sit and watch my body slowly waste away, then I might as well do it in a nice place. She can sit with our new French bulldog, Lenny, on her lap, and if I lift her hand she can pet him. We were in Budapest, discussing the fact that, since Susan could no longer move her arms, it took me 20 minutes to get her dressed. I didn't know she'd put it in a book, or that people would respond to it, and that it's now probably the most famous thing I will ever say. It's important to communicate those thoughts directly, so others know what they can expect from you.


Joanne Cacciatore, board certified in bereavement trauma, told The Huffington Post that she sits her clients down with their families so they can talk about what kind of support they need. I once heard a reporter from a competing newspaper refer to her as "The SS Wendel." That is the only time I have heard my five foot one inch wife referred to as a battleship, but it is appropriate. I have no idea how many bottles of wine have been uncorked out there, even though Susan can no longer drink. A trip to New York, where one morning she watched our 14-year-old daughter Marina try on wedding dresses, a morning Marina has called (on "Inside Edition," no less!) the dumbest thing she's ever done. Spicy foods, swimming, late evening walks, hugging our children and singing them to sleep: they are all things of the past.



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