The Last Word On Nothing

An explosive inflammatory response called a cytokine storm damages the blood-brain barrier. This may allow inflammatory cells and molecules—and possibly viral particles—to enter the brain. Patients may develop seizures, confusion, coma or encephalopathy (a brain abnormality that leads to altered mental states or behaviors). (Here.)

Back in April, as the pandemic was just revving up, my dad tested positive for COVID-19. Ninety years old, in a nursing home, a diabetic with kidney and heart issues, he was a prime target with a grim outlook. (His partner had died a few weeks before, negative for the virus but with many of its hallmark symptoms.) Unexpectedly, the virus barely grazed his lungs but ravaged his brain. It turns out, of course, there are many manifestations of this thing, in many combinations. This was his.

Over a handful of days our man of literature and panagrams was groping for basic words, cogency just out of reach. “I don’t know what to say,” he’d finally say, having stalked his intention like a hunter only to watch it bolt into the tall grass.

He called me incessantly at first, at any hour, asking the same questions again and again. More worrisome was when he stopped calling—he lost the mental capacity to dial—and then stopped answering the phone, the ringing no longer meaningful. His audiobooks sat untouched: He couldn’t follow the stories and seemed uninterested in trying, and anyway he had no idea how to turn on the machine that plays them. Soon, he lost control of bodily functions, and he seemed unashamed that others had to clean up after him. He stopped walking. Already a wisp of a man, he lost weight. Already nearly blind, his mind’s eye, too, went dark.

How frightening to lose your mind and bodily controls in rapid succession, but imagine doing so as masked figures in rustling paper gowns float in and out of your sliver of vision, their voices muffled, their words nonsensical. For him there was no leaving the room, no exercise, no showers–just this absurd, terrifying theater. “It’s the infection,” I’d tell him when the nurse would put the phone to his ear–hoping I could calm him. “It’s messing with your brain, but you’ll be thinking straight again soon.”

I promised it was a temporary prison. I hoped I wasn’t lying. I wasn’t sure.

He fought it, hard. He dug deep, groping for the reset switch, searching for order. He knew who I was, who my brother was, to a point: He couldn’t wrap his head around the idea that we were his children or that he’d been married to our mother. The family tree loomed in unreadable script. He craved schedules and routines and was frantic when no one seemed to be following them (even when they were). His panic grew as his thoughts ran in tighter circles.

We thought we would lose him to this horrendous thing, and, though it was heartbreaking to feel this way, we hoped it wouldn’t take long.

And then, after many weeks of regressing, dear old dad turned around–a storm-blown stray who caught the scent of home–and began the journey back. We held our breath, wondering what would be left of him when he arrived. His world returned piecemeal—here are some words, here is how to do this basic thing, these are your children, this is who you used to be. On and off he made more sense; he asked fewer bizarre questions. He ate, slept, shuffled to the bathroom and used the toilet.

When, finally, he picked up the phone and dialed my number on his own, I cried with relief.

Now months on, he’s back to naming most of the state capitals (Olympia, Washington, has always tripped him up) and telling detailed stories from his 1951 trip to Europe (his first of 10!) with minimal prompts from his travel diaries. He lies in bed and builds timelines and family lines, calling me to fill in a few blanks about who, where, when, but mostly sorting things out on his own. He’s back to puns and other wordplay. And he only flubs a line or two in “The Impossible Dream,” and none in “Danny Boy,” when singing aloud, badly, roommate be damned.

I’m eternally grateful to the superhuman nurses who got him through what we expected would kill him. He’s not fully recovered, which isn’t surprising: Cognitive effects from COVID-19 can be long lasting and subtle, say the experts. He may have suffered silent strokes or lack of oxygen to the brain during his illness; there may be leaky blood vessels that could haunt him in a year, a month, or tomorrow.

COVID infection frequently leads to brain damage — particularly in those over 70. While sometimes the brain damage is obvious and leads to major cognitive impairment, more frequently the damage is mild, leading to difficulties with sustained attention. …

Although many people who have recovered from COVID can resume their daily lives without difficulty — even if they have some deficits in attention — there are a number of people who may experience difficulty now or later. One recently published paper … concluded that the combination of direct effects of the virus, systemic inflammation, strokes, and damage to bodily organs (like lungs and liver) could even make COVID survivors at high risk for Alzheimer’s disease in the future. HERE.

Some patients end up psychotic. Thankfully, not him. And the virus left my dad with little memory of his illness—he can’t recall what it felt like when his mind was out of whack; I think he wonders whether the experience was truly his own.

COVID-19 did him one other relative kindness: During those terrible weeks, it drew a curtain over the big depressing scene of his isolation. Now that he’s well, or nearly so, he’s thinking about the smallness of his life again. Fully dressed for another day of nothing, he lies atop the made bed in his darkish room—it’s a Chicago suburb in winter–wondering why he bothered to put on his shoes. His window faces a brick wall; if he wanted to connect with the natural world, as I would need to do, he’d have to press his cheek against the glass and peer up between buildings to glimpse a sliver of sky.

The hours limp by. He lies there, waiting for his daily calls. He thinks. He remembers. He worries–a lot. I suspect he cries.

And still, sometimes, he calls me at odd hours, as he did when the infection was just starting to take hold. “I’m very confused here,” he’ll say, having dozed out of boredom and awoken to the standard gray gloom. “Is it day or night? Am I losing my mind?”

He is not. His mind is incredibly robust, miraculously so. And regardless of the hour, his calls relieve me: He is awake, still inhaling, still exhaling.

I want to say: Please, please keep it up. Stay with us. Hang in there. Breathe.

I do say: You amaze us. We love you. We hope to be there soon.

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Photo credit: CDC