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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

By Emmet Rosenfeld    Published Friday, January 01, 2010

The author and his father, Stephen Rosenfeld, a longtime journalist at the Washington Post who wrote more than 10,000 editorials for the paper. Steve Rosenfeld was diagnosed with Parkinson’s ten years ago and retired soon after. His son writes: “I remember his vigor when he was the age I am now.” Photograph by Scott Suchman

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.” 

Comments

Dear Mr. Rosenfeld,
I was visiting my daughter, Meredith, who lives in Washington DC and read an old Washingtonian where you wrote about your father’s journey with Parkinson’s disease called Grace and Grit. I wanted you to know I went through that same experience with my father in the 1970s, nearly 35 years ago. I was a college student and a twin, and we were the middle children of a family of 6 kids.

My father had always been so robust, full of humor, handsome and an outstanding community leader and trial lawyer. This cruel disease would rob him of his time, and deprive me of the opportunity for my own children to ever know him, and cruelly take away my own moments with him. I commend you for recognizing the man he has helped you become. It is in those soft and silent moments which define us, that allow us to hear him speak through us to our own children.

I thought back, with both tear and emotion to the day when we were told about this disease which would take away the body, but never away the soul of our dad. He was 54 when he was diagnosed, he would die within 4 years; perhaps by a blessing-- a heart attack-- we would all look at it in different ways. Never would I say I wished the end for him. Rather, I saw it as a release, a letting go, and I wanted him to have that peace.

As I look back on time, I am reminded of many gifts I carry with me throughout my life, because of that relationship with my father. I loved your story about the tennis with your twin brother, and the subtle way he would get your attention after a long Saturday evening of underage drinking , and breaking curfew with your brother. I love how he made his point to you without ever speaking the words.

I loved the way you told of him persevering for the card for his wife, your mother, and how you helped him solve the problem of his spelling. The irony of his job as an editor was not lost on the cruelty of the joke, either. I appreciate the effort you make to allow your boys to look into the window of your father’s world with the guiding hand of a son who loves his father very much. I appreciate the time you have been given to put the pieces in order, time o teach you both reverence and perseverance. I appreciate the subtle way you are able to tell others that such cruelty was so unfair, and yet the hope you carry with you as you take on this journey is not to be taken from you without a struggle. You are blessed in many ways.

I carry within my heart several memories that can never be taken away from me, either. I want to share them with you. My father would take a cup and saucer from the cupbaord for his morning coffee and it would clink and clamor as he would shuffle from the cupboard to the kitchen table. I remember how I wanted to rescue him, to save his face in case the cup and saucer tumbled to the floor. I remember his need for independence as he encountered these struggles, so I stood there watching, but not watching; balancing my fear with his frailty. I will remember those simple soft moments for always.

I remember his shuffle, and then the" powered stride" which would follow as though he were wound up like a mechanical man catulpulting forward out of control toward his destination across the room. Parkinson’s had no warning as to whether it would be the shuffle or the catapult. Both of them vying for position, none of them dominating the moment. I think the unpredictatability of the moment was part of the frustration. I remember the sweating and then the re-showering when there really wasn’t even time for it. And I remember the sadness in his eyes. Those were moments that robbed him of dignity, but also moments which defined the person he was.

I remember getting phone calls late at night in college at my apartment. He would call to" check-in on me, and make sure I was home on a Saturday night." This was before cell phones, and I only received the blessing of his phone call if I was home to receive it. I cherished the moments because I knew he was thinking of me as he dialed that number at half- past midnight. That memory hit me like your tennis one: I knew my father loved me.

I remember also the day he put on my Halloween costume , an orange paper mache’ pumpkin head. I would be the headless horseman and he would show me how I looked by wearing the costume and sitting on the formal living room chairs for a picture. His eyes peered out behind the contact paper black triangles and pointed teeth mouth which were pasted on the paper mache’ head. I remember wrapping the bright-white sheet around him as he sat , peacefully, without tremor in the living room chairs. I placed the oversized orange bobble-head upon his own head. I begged him to smile as I was taking his picture-- although his face could not even be seen behind the paper mache’ mask at all;. we would both laugh at that one.

I remember him sitting in the chair , posing for me as I took a picture of that final moment in time. I remember taking that picture as I prepared to go trick -or- treating with some third graders I had been teaching. It would be the last time I would go trick -or- treating until I would take my own children nearly a decade later. Little did I know these last silly memories would be the ones etched forever in my mind this night before his death.

It was never easy letting go, or saying good-by. My father would never know my husband, Richard, nor my children Meredith, Matt, Jason, Justin or Courtney. He would never have been able to see how much Jason looked like him, nor the passion in his arguments about the economy or politics. He would never see the easy way Matt would carry on a conversation, or talk to him about music or sports. He would never hear Meredith present her point of view. He would never hear her preface a conversation with."It’s no use arguing with me because you are never going to win." He would have loved every argument, utilizing the Socratic method, point by point , marveling at her tenacity, but unwilling to relent.

He would never see his grandson Justin ’s dry sense of humor, the subtle way he seems to win your heart. He would never see the look on Courtney’s face when she rolled her eyes from being teased. No, all of those would be taken from him. But there would be hope and courage, perseverance and humor given away freely from father to daughter. All of those, and a memory of being loved would forever be etched in my memory. No one could erase those memories, and that is the hope that awaits you. Stand tall, embrace the difficulties. You will become the man your father always hoped you would become. It is inevitable.

Thank you for sharing your story. It allowed my story to unfold with both grit and grace. Take your time, and devour every moment. They are his legacy to you, and you are the voice to your sons.

Elise Wright Mull
2515 Woodview Drive
Ames, Iowa 50014

Posted by: Elise Wright Mull, Apr 05, 2011 09:39:16 AM

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