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Grace and Grit
Watching Parkinson’s disease take over Dad’s body and mind is a lesson in fatherhood—his and my own
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.”
His brother corrects him: “He’s got Parkinson’s, Will, not epilepsy.”
I hustle them outside to play.
Later that day, I manage to break away for some tennis, a game I’ve picked up again after years without touching a racket. My last regular partner was my dad, who didn’t set his own racket down until he was a few years into the Parkinson’s fight.
I remember his vigor when he was the age I am now. Home from a game of doubles, he’d tackle chores in his tennis whites, propelling the rotary mower up the hill or yanking strands of ivy.
He was raised on tennis. I remember, as a boy, visiting the Pittsfield, Massachusetts, home where he’d grown up. It sat grandly on a hill, approached by a serpentine drive. In spring, we’d ascend a path of soft brown spruce needles beyond the back-yard pool to a series of steppingstones, laid by my father and his twin brother as teenagers. These curved through the woods to a clay tennis court tucked into a glade.
Dad played throughout his adult life. His partners were sometimes Washington powerbrokers, such as “Z’big”—Zbigniew Brzezinski, Jimmy Carter’s national-security adviser. Just as often, he’d corral a family member. Doubles was preferred. Weekend games were ritual, and vacation round robins provided endless permutations. The jovial reminder “Guard your coat—and your alley,” was invoked after a passing shot down the side when someone inched too close to the middle in an attempt to poach an opponent’s return. My older brother suspects this quip was inherited from my grandfather, a joke about a garderobe (a castle privy).
For a man who made his living with words, my dad’s tennis game was notably devoid of them. He analyzed events of global significance with incisive prose but lacked a vocabulary for small talk. Tennis stood in for that—a way to be together without the burden of words.
We were trained early that the paramount virtue on the court, as elsewhere, was to be considerate. “Inconsiderate” was perhaps his most damning epithet, one that could be earned for various infractions: not hustling to retrieve balls between points, not responding promptly to the signal of a raised racket or the phrase “Need one,” by which one asked for a second ball before beginning a point. Serving with a single ball was unthinkable, except perhaps by a teenage boy with a hangover.
These days, I steal weekend hours to play with other neighborhood dads, recalling my father at unbidden moments. On one such afternoon this summer, I stand on the red asphalt behind the baseline. Neat white lines demarcate orderly rectangles of green before me as I fall into an easy rhythm. Long rallies are punctuated by banter with my partner or the occasional rumble of traffic beyond the border of cedars that separates the courts from the road. My eyes follow the trunks of swaying poplars to the sky, where leaves snicker in a breeze that hasn’t descended to court level.
I’m transported to Saturday-morning games when my twin brother and I were 16, my father on the other side of the net, wordless and resolute.
“It smells like a brewery in here,” Mom would have observed earlier that morning upon entering our bedrooms. A late night was no excuse to miss the appointed game. I can see now that the routine itself was a form of discipline. Pushing us from sideline to sideline with relentless flat ground strokes, Dad expressed his disapproval of our teenage drinking without uttering a word.
I’m not sure at what point the tables turned, when the 6–0 drubbings gave way to split sets—certainly by the time we were in college. The day finally came when I was the one who could take sets from him at will, and I did without quarter for a while before realizing that there was no satisfaction in unwavering revenge. By then, the pleasure our infrequent games supplied was a chance to be together. Father and son and the clear white lines.
The lines were always there between us, on the court or off. The somewhat taciturn but loving relationship my father shared with his children was very different than the one we aspire to with our own kids. I attribute this in part to the parenting mores of his pre-boomer generation.
I witnessed my own sons come into the world; he wasn’t in the hospital when my twin brother and I were born. I coach my son’s soccer team; I recall my parents being thrilled when my twin brother and I could at last ride our bikes to baseball practices and no longer needed carting around.
Dad’s emotional reserve was also a function of his career. From on high he watched the events of the world unfold each day and parsed the personalities of heads of state. The small dramas of our lives could never compete with the collapse of the Berlin Wall.
There were family dinners, of course. Around the dining-room table, both physical and verbal slouching were corrected.
“Sit up,” he’d correct. When we recounted a story, we’d hear “Don’t make me ask a million questions.”
The most energetic exchanges, particularly as my siblings and I got older, concerned foreign policy. As we argued about events in Israel, he’d patiently supply us with context to bolster our points of view, which were reflexively to the left of his. That intellectual push and pull, like the tennis, was rigorous. With Dad, it was how we connected.
The unused violin in my father’s study was a relic of his youth, of a time before he’d chosen words over music. When I was younger, he played violin for our preschool class and helped my twin brother with Suzuki exercises until Jim quit in fourth grade. On those rare occasions when the case came open, the flash of blood-orange velvet in which the mahogany instrument rested never failed to capture my imagination. It was like a peek inside Dad himself—one I wasn’t sure I was supposed to have.
There were other glimpses of his musical past.
“Do C! Do C!” we kids would plead, competing with the Sunday Post for Dad’s attention. He’d pause for a moment, form his mouth into a schoolboy O, and in a sweet tenor sing a single note. We’d run to the piano, find the white key to the left of the two blacks near the middle, and press it down with the excitement of tearing open a package. There in the Acrosonic’s beige timbre would be the exact same note.
Dad’s family has always been musical: His sister has enjoyed a career as a flutist and his brother as a cellist. Their father, a clothier, was both a skillful amateur and a music reviewer for more than 50 years for the Berkshire Eagle. My grandfather was also a longtime patron of Tanglewood, the center for the performing arts, where he and his wife were a fixture during concert season. Musicians were frequent guests at the family table in Pittsfield and for chamber music in the living room.
Dad published a memoir called The Time of Their Dying in 1977, after losing both of his parents to cancer in the span of a year. I can summon my own memories of that time—hushed visits to the big house and the vague understanding that Grandpa Jay wasn’t around anymore to put eggshells on his eyes at breakfast to make us laugh. The eggs were served soft-boiled, in a cup, gently cracked with a spoon and lightly salted. After breakfast, he’d open the bay window and let us sprinkle birdseed on the sill.
My father stood in front of the wall of cards in the Hallmark store. For a moment, I shared his befuddlement—row after row of cards crafted for a friend or a mother-in-law or the mail carrier. My boys tussled over who would give Mommy a card that played a pop song.
Dad wanted a Valentine. That was all. Even the Parkinson’s couldn’t dull a habit instilled over 42 years of marriage. “He had a card already,” my mom had told me. “He can’t find it.”
I’d offered to take him down the block to the card store as much to give her a break as to replace the card. And so, 20 minutes after we left the house, there we were. We’d surmounted the usual challenges: the arms that wouldn’t cooperate to shrug on a coat, the feet that shuffled over uneven brick sidewalks. Now the wall of cards.
“Here,” I said, holding up a couple of less elaborate ones. With the kids getting antsy, I wanted to move him along. He glanced at the cards without interest. A man picked his own Valentine for his wife, his expression seemed to say.
A dozen times a day, his urge for independence reduced my mom to excruciating slow motion. As my own frustration mounted, his hand reached out and plucked a card from the clutter. Something familiar: Peanuts.
“Perfect,” I said. “Let me get you a pen.” My older son helped him to a bench, and I borrowed a Sharpie at the counter and handed it to my Dad. He grasped it.
Both boys were watching. Third-grader Jack displayed a rooting interest: He likes to sit at the kitchen table and make cards, composing drawings and forming letters. Will, the mischievous one, eyed the permanent marker of the type he’s never allowed to play with at home. “Leave Pop-pop alone, boys,” I said. “Let’s get Mommy’s card.”
Accustomed as I’ve become to helping my dad with quotidian tasks, I didn’t care to watch him struggle with this simple act of composition. I prefer to remember the man who used to receive mockups of the editorial page by courier on Saturdays, marking them up and calling in the changes by phone as he peered over his reading glasses.
From the musical-card kiosk, I watched him as his hand daubed at the page. There was an assurance that belied the shaky grasp with which he held the pen: When a headline is right, it’s right. I walked back to the bench as he was still staring down at the card but no longer writing.
He was perplexed, I could tell, even though his face wore the inscrutable frown that is Parkinson’s mask. The pen lingered above the card, poised, just as it had those many years ago when he peered at the next day’s editorial-page proofs. Only this time there was no movement.
I waited a beat or two before prying the card from his fingers.
“Something’s wrong,” Dad said.
I glanced at the crabbed handwriting on the card, a jagged but familiar version of the script he’d always used to jot down notes on a three-by-five card he carried in his breast pocket. “Always take notes,” he’d told me once, a reporter’s advice.
Inside the card with Snoopy dancing, Dad had penned his message to my mother. Three simple words, obsidian in their clarity: “Everything for you.”
With brevity, he had acknowledged the toll this unyielding disease had taken on the life my mother and he had hoped to have.
Even this moment of grace the jailer could not allow. Instead of “everything,” my father had written “everythink.” And now that he’d reached the end of the gesture—marshaled his mind and his hand long enough to complete the task—this inexactitude perplexed my father. That pen lingering above the page was him refusing to yield, even while he’d forgotten what had inspired the realization that something was wrong.
I took the marker and changed the “k” to a “g,” then slipped the card into the envelope. We eventually made it out of the store and around the block back to my parents’ house. On the way home, with the boys strapped into their car seats and the radio blaring, the moment washed back over me. A sob wracked my chest, and I held the wheel tight at 10 and 2.
As you read this, my dad continues his battle against the rising tide of this disease. There are windows of clarity, but they grow shorter. What in recent years narrowed to a few good hours a day is even more sporadic. And yet, just when it seems the levee’s breached, some spark that’s banked within Dad flickers.
The other night, I stopped by for dinner. Mom had asked me over because she was going out and was worried he wouldn’t cooperate with the caregiver.
My attempts at conversation during the meal clattered to the plate beside the meatloaf.
“Want to go out?” I finally asked.
“Okay,” he said.
“Try the chair?” I ventured.
After a brief pause: “Sure.”
An ultra-light transport chair of red chrome tubing is the newest piece of Parkinson’s equipment. It has four small wheels and must be pushed by handles from behind, unlike a wheelchair in which someone with sound arms might propel himself. Dad still walks on his own—for now. The chair is just in case.
He shuffled to the front stoop and sat tentatively in the contraption. Our journey began. The rubber grips were like the ones on my first bike, a three-speed with hand brakes. I talked to the back of his head as we moved over the uneven bricks of the sidewalk, chattering about work and my boys.
“I’m going to lean you back,” I warned, wheelbarrowing him across a cobblestone driveway. He pointed left at each corner, directing our route around the block.
The going wasn’t easy. His weight was solid in the chair and the terrain bumpy. Neither of us had the feel of it; it seemed he might spill forward if we hit an unexpected bump or I’d lose my grip when leaning him back.
But we trusted each other. About halfway through, with sweat on the back of my neck, I realized that the sheer physicality of the act was itself a connection. We weren’t facing each other on opposite sides of a net. We were surmounting a challenge together.
“You gave me a nice report,” he said when we’d made it back home and upstairs to his bedroom, though I’m not sure he could have recounted what I’d said. One by one, he took the half dozen pills my mom had rationed out, sipping water with a hand that shook only a little.
Yes, my dad is drowning, and I’m not sure anyone can save him this time. But to be the father I want to be to my sons, I’m bound to go in after him. What I can pull to the surface will someday help them know him, and therefore—I hope—know me.
“You’re a great writer,” my wife once told me, “but an awful communicator.” To the extent each is true, I credit my father, who in his way taught me both clear prose and emotional restraint.
I pray the first will prove an adequate defense against the second; I want a closer relationship with my boys than the one he and I shared. I also pray I can pass on to them the grit my dad is teaching me now, in his final act as a father.