This is what my cousin Jim says over the phone after announcing the obscene-sounding name of his terminal diagnosis—progressive bulbar palsy (PBP)—a form of ALS that damages motor neurons in the brain stem. The stem has motor neurons that help you chew, swallow, and speak. With PBP, you might slur your words and have trouble chewing and swallowing. It also makes it hard to control emotions. You may laugh or cry without meaning to.
I am in St Pete, Florida, in February 2018, where he and Anne, his wife, had just visited me the winter before.
“No passport needed for this country”, he says, his dry humor still accessible in the early stages of the illness. His voice over the phone sounds like someone has been tampering with his vocal chords and his testosterone. It is an octave higher than the masculine, reassuring voice I had become accustomed to over the last 15 years or so—the rational voice coming from an analytic, kind man, in the service of family and connection. The masculine steady voice of wisdom, protection, and guidance.
A voice my own father never had. And so I had come to look to Jim as a father figure, or at least, a healthy male role model. And to Anne as a warm, emotionally communicative, authentic, nurturing mother figure.
“And I don’t even have to pack my bags for this trip.” We both laugh as best we can. I am warding off crying. “I won’t need to study any maps for this one.” Jim kept them coming.
“You should really write these down for those who will follow in your footsteps,” I suggest.
It is a relief to be able to talk candidly about death. Jim, an 85 year old retired psychologist and his wife Anne, a former bereavement group facilitator, are not unfamiliar with this territory. They have both been involved in the Circle of Friends for the Dying and informal Death Cafe’s in their Westchester community. They hosted group meetings in their home on Lake Katonah where they lived for over 40 years. With aging friends and neighbors, they support each other as they enter the realm of physical decline together in their 8th and 9th decades.
Things are no longer laughable when I visit them after returning to New York in April. Amidst a chaotic flurry of visitors and family from England, Jim joins in for meals, but, embarrassed to speak with his squeaky feminine voice, he retreats to his armchair in the living room to read the New York times or to his study work on his computer.
Cousin Jim is the patriarch, and last of the third generation of our Slovenian Lineage. His father, Joe, was my grandma Molly’s sister. Jim has spent much of his life researching our Slovenian past, recording the history of his own life with his wife and two sons, and traveling to almost every country in this world. His book shelves are lined with hand-produced bound books, documenting his life through photographs and writings. They are neatly organized by year. These are his legacy.
I visit Jim and Anne again, eight weeks after seeing them in May. With a tribe of friends and family helping, they had been moved from their three-story house to the one-story condo at Heritage Hill.
Jimmy’s head hangs in front at a 90 degree angle when he isn’t wearing his neck brace. The muscles have deteriorated due to the loss of neurological activity. PBP, this deviant relative of ALS, starts from the head and goes down. He succumbed to his surgeon’s suggestion to install a feeding tube to avoid choking to death. Now Anne, who has gathered people together at the table with three incredible meals a day for five decades, pours a formula down Jimmy’s tube.
While I am visiting, Jim lifts his shirt to show me the alien tube disappearing into his belly.
“Is it uncomfortable? How does it not get infected,” I inquire out of my perverse curiosity. He shows me the two separate appendages at the other end of the tube, one for feeding and the other for flushing. Anne translates or Jim resorts to writing with erasable markers on his white board to communicate his still-sharp and lucid thoughts.
We are at the table for dinner, Jimmy still trying to resume the pleasant communal ritual of normalcy, eating soft “safer” foods to supplement the uneventful delivery of his daily nutrition.
He begins to choke. Anne quickly follows him into the kitchen, where behind the still-swinging door, I hear the swooshing sound of the suction machine, which hangs on a stand with wheels. Its clear ringed, flexible, swan-like neck and beak pulls and pushes with bursts of air at the obstruction in Jimmy’s esophagus.
Now the suction robot is quiet, and Jim shuffles back into the dining room with Anne. He sits, trying to retain some semblance of dignity, and continues to eat his dish of fruit mash.
I ask, “Are you still reading No Self, No Problem?” It’s one of the Buddhist books I offered him back in May. He points towards it on the chair and in his wispy soprano. “No, I’m finished. You can take it.”
As I drive away Monday morning into the gray rainy world, I allow the lump of sorrow choked down in my own throat to surface.
The bleak feeling of Jim dying and not existing anymore, probably followed quickly by Anne, erupts into the sound of me sobbing. I let myself play the movie in my mind of the wonderful times I have been privileged to experience with them over the span of years. My tears wash over my imaginary movie screen.
The rhythm of windshield wipers soothes me and my crying subsides, leaving a soft empty sensation in my chest, as I cross over the Hudson on the Newburgh Bridge.