I’m not going to play the violin in this story, in which regard I’ll be very much like my father, Stephen Rosenfeld, whose violin sat in its tattered case in his office for 40 years while he worked as a writer and editor for the Washington Post. He retired, not without a sense of poetry, on the first day of the 21st century, four months after being diagnosed with Parkinson’s disease.
Since then, as the only one of their four children living near them, I’ve seen my mother and him do battle with the disease at the same time my wife and I have been raising two boys of our own, now ages five and nine. As I’ve become a dad, I’ve gradually lost my own father.
He is in there somewhere. Sometimes when he talks, it’s as if the letters in the words he wants to use have been jumbled around like Scrabble pieces. It’s a cruel fate for a man who wrote more than 10,000 editorials in his career.
The disease came on easy. Dad was seated next to radio host Diane Rehm at an embassy party in the fall of 1999. He had recently been named editor of the Post’s editorial page, a job he’d been doing de facto for several years while his colleague Meg Greenfield was battling cancer.
Dad was seeking advice from Rehm, who suffers from vocal problems, about a weakening he’d noticed in his voice. She sent him to her specialist, who couldn’t find anything wrong with his larynx but referred him to another doctor.
He broke the news to my siblings and me in a letter typed on the Post computer system with the heading proof of story dadpark; requested by rosenfelds on 9/25/99 at 11:15:58. Beneath that line of newsroom argot, the message was candid:
“A little medical note. I have a touch of Parkinson’s disease. The thing has a bad name but . . . a neurologist tells me my case is and need be no more than a nuisance, and is treatable and containable by drugs. . . .”
In his words I can hear the nonchalance of a film star of his era such as Katharine Hepburn, perhaps the prototype for the chin-up ethos with which we were raised.
He continued: “During the summer I noticed some slight symptoms of something: tremors of the hands, slower body movements, ‘gait disturbance’ (hands swing less when you walk) and some memory impairment—more than my usual. Mom encouraged me to go to the doctor, an internist . . . who figures it’s Parkinson’s and who prescribed the drug Sinemet.”
A few months ago, he and Mom came by the pool where my wife and I were hanging out with the kids. I helped him from the car and through the bathhouse. By the time we got to the deck, his legs had quit. He was stuck, leaning on my arm while his feet marched in place. The message from his brain wasn’t making it down to his thighs, or they weren’t obeying. He looked helplessly at his churning feet.
“Look up, Dad,” I said.
“Take a big step, Steve,” my mom coached, echoing advice from the physical therapist.
It was hard to imagine it would come to this when Dad wrote his 1999 letter to us:
“I do not look diseased to the naked eye. Parkinson’s symptoms are containable. The disease need not be either body-limiting now or life-shortening. I am not particularly concerned about it, and you should not be, either. The docs are keeping a close eye on me: MRI and brain scam to come to make sure I had no small strokes in the brain. It’s no big deal, and I’ll keep you posted.”
“Body-limiting now” jumps out for its misleading precision. The decline has been slow, if relentless—to the point these days where he spends much of the time in a chair when we’re visiting, observing but not part of the flow. The typo “brain scam” catches my attention, too, for its ironic accuracy.
A decade after his diagnosis, my dad’s élan back then seems grimly risible. “We were babes in the woods,” my mom recently said about those early years.
The grace and dignity that has sustained them ever since has worn thin under Parkinson’s inexorability. Loss of control of the body and then the mind, the infantilization of a man—these are not graceful. Dignity has given way to painstaking routine.
Four years ago, on his 73rd birthday, Dad lost his footing while wading into a swimming pond during a Vermont vacation. Mom, standing a dozen yards away on a sliver of beach, was rummaging in her bag for car keys. Looking up, she noticed my father’s disappearance. “Steve!” she screamed and then “Help!”
A young man of about 20 dove in and, within three minutes, found Dad and dragged him out. By this time, a couple of off-duty paramedics who happened to be golfing on the small course nearby also had responded and begun CPR. An ambulance arrived and took my father to the hospital.
Around 11 that night, I got the phone call every adult child of an elderly parent dreads. By noon the next day, I’d traveled through the looking glass and emerged, a few steps behind my mom, to find a withered man with a breathing tube down his throat. In the ICU, monitors pinged and beeped, and I wondered if he’d ever wake up.
Seared into my brain is a bedside moment from later that week, after my father had regained consciousness. Despite our efforts to explain to him what had happened, he looked at me with a child’s fear in his eyes, arching his eyebrows as if to ask: Why can’t I talk? We learned later that swelling on his brain had erased all memory of the accident.
After Dad’s release from the hospital and recovery in a rehab facility, he returned home to Alexandria. During the weeks that followed, he suffered from delusions that Mom wasn’t his wife but a stranger who was imprisoning him. There were nights he packed a bag and tried to leave the house, still in his pajamas. Mom sometimes called to ask me to talk him down when he was agitated or wouldn’t take his pills.
At a low point, I had to sleep outside their bedroom on a cot to prevent him from wandering. I managed to slip back to my own house early that morning. When the kids woke up, five-year-old Jack and I fed carrots to Star the rabbit while my wife spooned applesauce laced with pink medicine to toddler Will for his latest ear infection.
After several months and countless adjustments to Dad’s meds, we more or less vanquished his delusional behavior with a mock wedding ceremony in the dining room. The trauma of nearly drowning had propelled him into a period of dementia, from which he then recovered to a degree his doctors considered remarkable. It’s only now, years later, that the condition has returned.
“Dad, Ferdie’s having a seizure!” calls my older son, Jack, now nine. I rush into the living room where our 13-year-old corgi’s rotund body has stiffened while his paws claw the air. He pants as saliva foams from his jaws. The sight is scary, especially to five-year-old Will, but not unfamiliar.
Ferdinand’s epilepsy has grown progressively worse over the years, despite increasing doses of meds. “Get a towel, Jack!” I call as I bend to the dog. There’s not much to do but sit with Ferds and clean up, then get some more meds on board once he’s settled.
“What is a seizure?” Will asks after things have calmed down. We’re sitting next to Ferdie, stroking his ears. I picture a phrenologist’s drawing of a skull, with different regions labeled.
“It’s when the electricity in Ferdie’s brain doesn’t work right,” I say. “It makes him . . . confused.”
Will pauses for a moment. “Is that what Pop-pop has?”
I look at my son, who will never remember my father in any way except as a sick old man.
“Kind of, Will.”