Life with dignity

I haven’t read any of Lionel Shriver’s novels, but she came to my attention years ago when she spoke up about “cultural appropriation.” That is, when authors of one race or ethnicity write from the perspective of another. This is seen as not merely inauthentic, but also exploitative. One year at the Brisbane Writers Festival Shriver gave a keynote address called “Fiction and Identity Politics” in which she challenged the legitimacy of cultural appropriation claims—while wearing a sombrero. Not the way to win friends and influence people, perhaps, but it took nerve.

Shriver’s nerves are the subject of her latest article for The Free Press, titled “I Lost Control of My Body.” After back surgery last summer, she developed Guillain-Barré syndrome, or GBS: “a rare autoimmune disorder, whereby the body attacks its own nervous system and the musculature dissolves.” As a result, for months she was completely dependent on others for every bodily function. It was torture to type. She couldn’t sit up or even turn over in bed. Once a fitness fanatic who took pride in doing hundreds of sit-ups in a single set, she is now, after months of boring and exhausting therapy, barely able to hobble with a cane. She may yet rejoin the ranks of the mobile, but it’s a hard road ahead with uncertain rewards.

Shriver compares her experience with that of a fellow novelist: Hanif Kureishi, whose memoir, Shattered, describes a similar swift decline with no hope of recovery. And no discernible purpose. Three years ago, Kureishi was sitting at a table when he blacked out, fell off his chair, pinched his neck, and came to as a permanent quadriplegic. He sees no saving grace in his predicament; Shattered is a primal scream against cruel fate.

Though more philosophical, Shriver takes a similar hard-nosed attitude. She has no use for those who submit themselves to divine will: “There’s something passive and wussy about lying back and taking it, defeatedly making your peace with an abruptly wretched existence.” She’s skeptical about gratitude as well. Were she to regain full use of her limbs tomorrow, she’d be deliriously grateful for about 24 hours before slipping back into the heedless acceptance common to most of us. And doesn’t constant gratitude admit underlying anxiety, “that at any single moment, wham, everything for which we’re so ostentatiously grateful can be taken away”?

I’d like to introduce her to Joni Eareckson Tada, who has managed both immobility and frequent pain almost as long as Shriver has been alive. A less passive, wussy, and defeated soul would be hard to imagine. Still, could any functional person read Shriver’s article without a prickle of fear at how vulnerable we all are?

The New York State Assembly recently passed its Medical Assistance in Dying Act, designed to help people in such conundrums make a dignified exit. Dignified, as opposed to dependent on strangers to feed, clothe, and dispose of their bodily waste. I think of dignity often in connection with my husband, now approaching the final stages of Alzheimer’s dementia. He can still walk, sit, stand, and feed himself—sometimes even with a fork—but is dependent on me for everything else. It’s a mercy that he’s not aware of, and could not have foreseen, where he is now. But often, while changing pullups or undressing him for bed, I remind myself: This could be me someday.

Someday, the Lord told Peter, “when you are old, you will stretch out your hands, and another will dress you and carry you where you do not want to go” (John 21:18). Thus He predicted “by what kind of death [Peter] was to glorify God” (verse 19). If the tradition is true, it’s not exactly a “death with dignity.” Yet, by what Matthew Henry calls “the strange alchemy of Providence,” it is a glorious one.

Christ stretched out His own hands and let strangers take Him where He dreaded to go. He knew what was coming when He prayed, “Father, the hour has come; glorify your Son that the Son may glorify you” (John 17:1). Glory began with the most ignominious death.

I kneel to towel off my husband’s legs after a shower and think of Christ kneeling to wash His disciples’ feet. I am obliged to treat Doug with dignity, but God has a greater goal in mind for both of us. If humiliation is the seed of a glorious bloom, how can I complain?