Excerpts from the Book

From Chapter 1:

The Day Everything Changed

“I think my husband is having a stroke.”

I winced as I spoke those words to a 911 dispatcher. Saying them might mean they were true, and I could be wrong. I was not a nurse, after all. I was a wife. Chuck and I had just finished our weekly tai chi class at the island’s Senior Center on a warm, sunny morning, and he was sitting across from me at a Waterfront Park picnic table.

When he heard my words, Chuck scoffed. “I feel fine. Nothing’s the matter with me.”

I wished I could believe that. But a minute earlier I had watched him trudge up the path above the Senior Center to the table where I’d been waiting for him. He had dragged his feet through the gravel as though his canvas shoes were filled with cement. At the top of the path, he’d thrown himself down on the bench and said, “Why I am walking like this? I must be getting old.” Then he slumped sideways, and the right side of his mouth drooped. We were expecting our daughter-in-law, who is an R.N., to join us any minute, but I didn’t think I should wait. I dialed 911 on my cell phone.

From Chapter 2:

Be Brave

In the fall of 1968, my husband-to-be, Chuck, and a fellow teacher defied their high school principal’s instruction that faculty members remain inside the school building during a student demonstration that had drawn a phalanx of Chicago police dressed in full riot gear to the street outside. As the students and the police marched toward one another, Chuck and Jim rushed outside and planted themselves between the two groups. After pleading with both sides, the men successfully managed to defuse the confrontation. Now, that was brave.

Of course, that act of bravery happened many years before Chuck and I heard a neurologist utter the words “Lewy body dementia,” and we found ourselves waging a battle from which we would not emerge victorious. Eventually the Lewy bodies would win. Yet Chuck continued to be brave.

The lingering cognitive and physical effects of his stroke, plus a difficult early stage of LBD with hallucinations, wanderings, and delusions led me to the regretful decision to place Chuck in a skilled nursing facility where he spent the last six years of his life. I visited almost every day, and he continued to reach out for life’s simple pleasures—including car rides, afternoons spent at my apartment watching boats and seabirds in the harbor, coffee and lunch dates with friends, and spending family holidays with our children and grandchildren. After those early stages had passed and he had recovered a great deal of his cognitive awareness, he could have stayed in his room at the nursing home, but he chose not to. He chose to get up and get dressed and, with great physical effort, to leave the facility. He chose to be brave.

From Chapter 8:

Go Inward, Into Your Proper Darkness

Chuck used to teach Shakespeare’s “Julius Caesar” to high school students in Chicago. He would challenge them to cite three consecutive words from the play, and then he would identify the act and scene from which the words came, the character who spoke them, and to whom. A few weeks ago when we were filling out our absentee ballots, he began to weep because he could not remember his last name.

We have much to learn from this time.

Samhain is about potential. With courage and reflection we can change. Samhain suggests that our lives are not so much about progressing forward, but about passing through cycles.

It is 5:00 p.m., and the sun has already set on this bleak November 1, the first day of the Irish New Year. It is Samhain. Today we are instructed, “Go inward, into your proper darkness, and be a witness to your own growth.”

From Chapter 9:

Viaje Bien

I am riding a green-and-yellow Seattle Metro bus on a dark winter morning. Rain slides down the bus windows while the noisy heater blasts hot air across my legs. Seats are crammed with riders wearing damp coats giving off odors of wet wool and mothballs. The aisle is streaked with mud. I stare blankly at overhead signs honoring the Metro Employee of the Year and the Metro Mechanic of the Year. Another sign instructs us about how to be good bus riders by not bothering others and having the correct change. The Spanish version is titled, “Viaje bien.” Ride well.

I am not riding well today, not even close.

I know where I am going and what I will do when I get there. I have been a volunteer radio reader at Seattle’s library for the blind for many years. But today I feel completely without purpose, energy, or even a shred of understanding about why that might be important or why I am going through these particular, familiar motions. My husband is sick. My expectations for our future have been shattered. There is nothing to salvage from our previous life together. He is not going to get better, and right now I’m not sure I am either. I don’t understand what I am supposed to do in this brave new world. As his wife, I think I was supposed to take care of him, but apparently I have failed at that.