A month ago, Richard and I were returning home from our last-minute, rushed trip to see his mother and family in northwest Arkansas. He was walking with a cane, dressing himself, and generally able to function perfectly competently if perhaps less gracefully than he once had. We figured that he’d be good for a while longer.
Four weeks later, he is bed-bound, and has been since the morning 17 days ago when he was “too tired” to transfer to the wheelchair and be rolled to the table for breakfast. He hasn’t left the bed since.
He’s now too weak to sit up without help, or even roll over. He can’t dress himself or manage the in-bed urinal. (His sense of humor is still intact though. He asked the other day if I had known I would be adding “urinal wrangler” to my job title. I said, “No, I didn’t. But I don’t mind.”)
His left arm and leg have gone limp, apparently because the glioblastoma which has fingered throughout his right hemisphere now impedes his brain’s ability to process signals from his left side.
Instead of the button-down shirts and creased Wrangler jeans he used to wear, he’s now clad in a long-sleeved duofold t-shirt and an adult diaper under a mound of blankets. (I’ve added “diaper changer” to my job title as well. It’s stinky and messy, but vital.)
For the first time in the nearly 29 years I’ve known him, my 180-pound husband eats less than I do, ingesting around two cups of food a day. But he can and does feed himself, and he enjoys his food–and his morning coffee and evening half-a-Belgian beer.
And even though his once-rich tenor voice has shrunk to a halting whisper, he can still talk, and does, commenting with wit and intelligence on any conversation swirling around him.
In short, he’s pretty healthy for someone who is dying.
“Healthy” in the context of the journey he is on, and in the sense of the origin of the word, which comes from an Old German root related to “whole.” Whole as in able to take this journey with eyes wide open and a healthy heart and spirit, determined to enjoy the moments as he can.
“Dying” in the sense of “in decline.” He gets weaker every day, and all sorts of nasty little problems have begun to crop up of the sort that indicate physical decline: skin sores, dry mucous membranes, difficulty with bowel functions, those scary gulp/choke noises he makes every so often…
As his oncologist pointed out, he’s been healthy throughout, especially considering that he has weathered four brain surgeries, a course of radiation, and two courses of chemotherapy. “He’s had two good years.” (It’s actually two years and 89 days since the Sunday morning in August when he saw birds–not that I’m counting.)
In that time, he’s been able to do some sculpture, travel, take long walks, go on a week-long meditation retreat, perfect his sourdough bread recipe, teach me how to lay sandstone pavers, swim in the snowmelt-cold Arkansas River on his birthday, finish projects around the house, collaborate on the design of a public interpretive garden, and participate in a couple of art shows. (The photo below is from “33 Ideas,” a show put together by Colorado Art Ranch at Denver International Airport.)
Two years, she reminds me, is long for someone with Grade IV brain cancer. The usual prognosis is a year from diagnosis, and he started out with traumatic brain swelling that could have killed him right then.
The other morning, after I shoehorned myself between the rails of his hospital bed and his warm body for our snuggle time, he said,
“I used to say I felt gratitude for being able to walk about on the surface of this extraordinary planet. But now…”
He paused.
After a while, I said, “And now you can’t walk about. But you can still be grateful to participate in life on this extraordinary planet.”
“Yes,” he said. “I am.”
Two years and 89 days… However many more days we have, it won’t be long enough.