Slow Dancing with a Stranger Read online

  At one point, Harvey announced to the scientists that he wanted to tell them something important at lunch, but when they got to the restaurant and looked expectantly at Harvey to make his announcement, he appeared to have forgotten he had ever said anything. Instead, he talked on and on about that raven-blue car he had bought during his sabbatical in Paris. He grew agitated as he told his colleagues that he needed to fly there right away, that he had parked his car in a garage, and he needed to retrieve it and find a more secure location.

  The other scientists tried over and over to persuade him to go straight back to the United States. They told him he needed to see a doctor, that he was not well enough to travel to Paris. But he insisted that he be driven to the airport to catch a flight to France, and there didn’t seem to be any way to force him to come home. They arranged for a colleague they knew to meet him at the airport and take him into town, but when he arrived in Paris, he caught a taxi to a hotel.

  I was frantic. I had known from the start that this trip was too much for him; the stress of traveling abroad and having to make so many decisions would ultimately leave him unable to function. But I was stymied by the same obstacles that had made it impossible to keep him from going to London or for his colleagues to prevent him going to France. There was no diagnosis. He insisted on taking care of himself and making his own decisions, even though his decisions no longer made sense. Yet he was still able to rise to the occasion and fool those who didn’t know him well—a taxi driver who didn’t realize the extent of his disorientation or the flight attendants on Air France, who never asked if he needed help.

  In Paris, Harvey eluded his colleagues for two days. Even now, I am not sure where he went. I later learned that he persuaded a bank teller to let him close out his personal account; the money was never recovered. He kept telling people he wanted to drive his car but could never locate the keys.

  I kept calling his colleagues in Paris, asking them to try to help locate him and to see if anyone traveling back to the United States might be persuaded to assist him. I was terrified by the thought of his getting rerouted and lost. I was also afraid to fly to Paris to retrieve him myself, fearing he might escape me too. Colleagues eventually tracked him down, but his return ticket was changed five times. Harvey refused to believe that he needed to go home right away.

  While I continued to try to arrange Harvey’s flight back, I made contact with a female colleague who had been at the London meeting. It was summertime, and we sat outside a hotel in Bethesda. She told me she was the only scientist that Harvey had allowed to care for him after he locked himself in his room. He had confided that he felt scared and confused.

  Years later, when colleagues at the London meeting recalled the events, they remembered the rapport Harvey had with this scientist. They speculated that perhaps Harvey connected with her because it was her first time attending the meeting. He did not feel as embarrassed with her because she had never known him as he was, and therefore could not judge how much he had changed. I could not help but note that she was very attractive and had also been the only woman at the London meeting. The intimacy of the episodes she described made me wonder in a brief, jealous moment if they were somehow linked romantically. But then the reality of Harvey’s condition sank in. This was not romantic at all; she was genuinely distraught to see a colleague unravel. I frantically wrote down the details she described and shared my frustration that similar symptoms in the past had still not resulted in a diagnosis. I took her card and asked if Harvey’s next round of doctors might contact her directly. Perhaps if they heard the story from another doctor, they might believe that Harvey was on a slow, but irreversible course of cognitive decline.

  I finally succeeded in arranging for a Paris research colleague en route to Los Angeles to accompany Harvey to Charles de Gaulle Airport, help him navigate through customs, and make certain he was on the right flight home. Harvey was supposed to arrive in Dulles around 2:40 P.M. Sunday. Arriving at the airport three hours early, I gained the sympathy of an airport police officer who had suffered head trauma and short-term memory loss. He escorted me in to explain the circumstances to the immigration officials. When I pointed out my husband in the crowd, Harvey didn’t look like someone who was impaired or even confused. He was well dressed, his appearance neat. I felt the sympathy my story had garnered starting to slip away. I wondered if they suspected that I concocted the story to earn special treatment. Once back, Harvey was like a recalcitrant little boy who knows he has done something mischievous but doesn’t realize for a moment that he could have been seriously harmed.

  The trip to London, coming so close on the heels of his breakdown during the lecture to the doctors, was the final straw for me. I knew that we had to get Harvey a real diagnosis. Even though it was Sunday, I drove Harvey directly from the airport to the office of a physician and close personal friend to run a battery of tests and persuade Harvey that he had to go to the hospital for further brain scans.

  The next day we went to see a brain trauma expert at the National Naval Medical Center right outside of Washington, D.C. There, my husband, Captain Harvey R. Gralnick could have his medical records from his thirty-one years in the public health service matched with his most recent X-rays. I was desperate to identify why Harvey today was not the man I married. Some may wonder why I didn’t do this at the very beginning. The answer: any results from these tests would immediately go into his work record and be reported to his superiors. Why put his career in jeopardy if it was something that could be diagnosed without fanfare and treated elsewhere?

  I remember the moment when I first heard the words I had been chasing for the past two and a half years. I was leaning against a filing cabinet, directly behind Harvey and halfway out the door of a cramped office, while he sat bewildered across the table from the doctor, whose shoulders now slumped as the bearer of onerous news: “A comparative of brain scans done after his 1985 car accident almost a decade before shows actual shrinkage as well as plaques and tangles in the hippocampus region of the brain. His PET scan offers us a 65 percent certainty that Dr. Gralnick’s condition presents as a form of dementia. It may even be Alzheimer’s. It is atypical in a person of his age, education, and level of physical fitness. Have you ever heard of it?”

  The word Alzheimer’s hung in the air. Harvey said nothing. His mind had already become a sieve in such technical conversations. I had never heard of the disease, and no doctor had ever mentioned it. Could he be mistaken? What were our options? How fast does the disease progress? What’s in store for us? Wouldn’t it be prudent to get a second opinion, since my husband presents differently each time he is seen and there is no medical consensus?

  Just then the doctor’s pager went off, and he stood apologetically to dismiss us, saying there was an emergency and he was on call. But before he left, his final words set me on the next course of action: “Unfortunately, if it is Alzheimer’s, there is no cure for this fatal neurodegenerative illness—and only four drugs available to treat symptoms. Under regulations I am required to report my findings, though not definitive, immediately to his agency head at the NIH.”

  The doctor disappeared into a nearby doctors-only elevator. Harvey and I were left behind to deal with the consequences and figure out what to do next. Harvey’s face was a blank. It wasn’t even clear he had heard or understood the doctor’s diagnosis. He looked up at me and said, “Isn’t it time for lunch?”

  I knew I had to move fast. His X-rays were still on the desk as was the doctor’s report. I slipped both sets of medical records into my bag and left a brief note on the doctor’s desk. “Will return tomorrow. Need to copy for our records and second opinion.”

  At work, the question about what to do about Harvey had already been set in motion. No one was willing to wait for a formal diagnosis. The news about Harvey’s breakdown in London quickly got back to his colleagues at the NIH. People were shocked and worried. By then, everyone understood that, whatever Harvey had, it was progressing
and unlikely to get any better. This was the beginning of the end of his career, and I knew I had to somehow find a way for him to leave and preserve his legacy. I drove him to work while I searched for a solution, but things took on a momentum of their own.

  One day, a prominent cancer researcher who had trained with Harvey came to the NIH to speak with a group of young fellows. He asked during his visit to see Harvey. One of the doctors there warned the visitor that he might find Harvey changed, that he was struggling with a medical issue. When Harvey’s colleague saw him, Harvey seemed lucid. “They told me you have Alzheimer’s,” said the doctor. His colleague’s words came as a total surprise. There had yet been no official diagnosis of his medical problem. Harvey came home angry, upset, and frightened. I complained to human resources that no one should be discussing Harvey’s medical issues or making their own diagnoses.

  Then I got a devastating phone call. Several women in Harvey’s lab had filed sexual harassment claims against him, saying he used inappropriate language and they felt uncomfortable working with him. I went in with our lawyer and Harvey to discuss what to do next. I felt angry and bitter during the entire conversation. Throughout his career, Harvey always promoted women scientists. His deputy was a woman, and he supported women’s careers. Now I felt that they were looking for a way to force Harvey out. I could never be entirely sure whether he had said the things the women claimed he did.

  One of the devastating effects of the illness is that it lowers people’s inhibitions. They often say and do socially inappropriate things as incipent dementia takes hold. Still, some of the claims seemed contrived. If the charges stuck, it would make Harvey ineligible for his pension and leave a tarnished footnote that overshadowed his remarkable career.

  It took less than a day to resolve his case. Harvey would retire with disability but would no longer be permitted on the NIH campus, effective immediately. For over thirty years, this place had been the center of Harvey’s daily existence. He knew every corner of the campus, and now he was no longer welcome there. We drove home in silence. Only I fully understood that this was the end.

  “And what will be his legacy?” I wondered in the days and weeks and months that followed. From time to time, there was a call from a former colleague inquiring about Harvey’s health. But Harvey was too distracted to make conversation, and I barely knew the people he had seen every day for decades. Most conversations tapered off into awkward silence. We had a few visitors at the beginning, but this too was excruciating to watch. He had trouble remembering them by name, and they certainly were unable to recognize the person he had sadly become. In the end, even these few visitors stopped coming by. It was just the two of us in the house, but I realized I was alone.

  THREE

  TWO UNCERTAIN WORLDS

  The first Monday morning after Harvey had been banned from the NIH campus, he paced aimlessly around our home like a man under house arrest. He was dressed for work, but he had nowhere to go.

  Harvey had only selective recall of what had happened at the fateful meeting at the NIH. Sadly, I reminded him that he had no options right now, but to work from home. “Love, let’s think of it as a sabbatical until we find out what’s wrong.” That’s all I could say as I cleared the dining room table to arrange an office on the first floor. But he had latched onto the notion that I was the one responsible for his predicament. That made me the prime target for his unpredictable and unprovoked rage.

  I was already late for work but afraid to leave him alone. Our housekeeper, Anna, had been with the family for years. Harvey’s paranoia was growing and this was no time to bring in a stranger, so I had hired Anna’s daughter, Olga, who worked as a nursing aide in a Quaker-run assisted living facility, to be his part-time companion.

  I knew we were fortunate to be able to bring in help, but even then, I was already worried about our finances. Harvey had been forced into early retirement, and his disability pension was $59,000 a year. He had no long-term care insurance. My career was also in transition. After eighteen years as a syndicated business show host and news anchor, my new assignment was to lead the re-launch of the U.S. Chamber Foundation. Under the circumstances, I wasn’t sure how long I could keep working.

  Even with hired backup, the act of leaving the house for work was an arduous task. Harvey’s doctor prescribed a sedative to be given if he got too agitated. As a precaution that morning, I slipped half a tablet in with his vitamins. Harvey spit them back at me. I gave up trying, anxious to deflect any confrontation. Then I called his lawyer who was prepared to recap with Harvey why he could not go back to NIH. We both hoped that hearing the familiar voice of a trusted friend might calm and defuse his misplaced anger. I reminded Olga not to let Harvey out of her sight as I slipped out the front door and headed off to work.

  That day I had an important meeting, but halfway downtown, I got a frantic call from Olga. Harvey had pushed her aside when she tried to block his exit at the front door. He was already a good distance up the street and headed for Cedar Lane, a rigorous three-mile trek to the NIH. A long-distance runner, Harvey could move fast, but he was carrying two heavy briefcases and wearing slip-on loafers. I knew because I had helped him dress before I left for work. I turned the car around, backtracking to cut him off before he came to any harm.

  A return trip that should have taken fifteen minutes took only ten, as I raced through side streets and cut through alleys, like a flashback to my adrenaline-driven reporter days when I raced to be first on a crime scene. Turning off Wisconsin Avenue past the NIH complex onto Cedar Lane with no Harvey in sight, I made a U-turn and headed in the direction of the Clinical Center, where Harvey used to see his patients. The route was devoid of pedestrians. What about Rock Creek Park, which intersected Cedar and where we ran on weekends? I had just driven under the overpass before Beach Drive when I noticed in the distance a solitary figure propped awkwardly against a tree. As I approached, I saw it was Harvey. Next to him stood like sentinels the two briefcases filled with research he would never finish.

  I pulled onto the gravel strip and jumped out of the car. “Hi, love,” I said to him, trying to feign a nonchalance I did not feel. “Need a ride home?” Harvey did not look surprised to see me there in the middle of the park. He merely looked up and said he had spent the morning at the NIH Library doing research and thought he would walk home for lunch. It was only 10:30, and I knew that he had never made it there, but I said nothing. He did not inquire why I wasn’t at work.

  We sat together for a few minutes while I debated how to cajole him to come home with me. Fortunately, Harvey began to get hungry since he had refused breakfast. I reached out to pick up one of his briefcases but the anger in his eyes made me recoil. I felt stung by his unspoken admonition that he did not need my help. He asked about his car again and why he couldn’t drive himself to the office. I told him it was in the shop so we’d have to commute together, but the only place he was going that day was home. Even after we arrived back at the house, I remained terribly shaken by the turn of events. I called work and canceled the rest of my meetings for the day.

  With Harvey now home all day, I tried hard to keep things as normal as possible. It was maddening, but I just quietly played along as if it were the first time I had heard, “When can I go back to work?” “Where’s my car?” “How come you are in my house?” “Do I know you?”

  The most pressing issue was figuring out what was going wrong with Harvey. I wasn’t sure how to explain my current home situation at work. Under new leadership, the broadcasting division had been decimated, our ranks stripped away, the studio emptied, and jobs reassigned. Any request for time off would be viewed critically. There was no way to manage Harvey at home without devising a better plan. My accrued vacation time combined with sick leave would give me six weeks to try to pin down a diagnosis. I needed to be careful not to jeopardize my position at work. Right now, my job was our sole source of income.

  At first, I tried to engage Harvey in the quest f
or information about his symptoms, but that once-brilliant mind could no longer remember the most basic tasks. He began needing prompts on how to button his shirt and reminders to bathe and to brush his teeth. There were days when he engaged in endless repetition and others when he said nothing at all. It was hard to decide which I disliked more. But if you asked him directly how he was, he answered that he was fine.

  We only had a short time before my leave would end, so I pressed to have Harvey seen by a prominent neurologist and physician at Johns Hopkins. The wait was six months. I wrote a letter to the then president, citing my husband’s contributions in the research community and requesting an urgent second opinion. Perhaps Johns Hopkins, one of the leading research hospitals, could help me solve the mystery of Harvey’s symptoms.

  Two weeks later, armed with his test results, MRI scan, and my typed observations, we entered the outpatient assessment center in Baltimore. To protect Harvey’s privacy, instead of using his real name, I wrote in the name of his favorite ’82 Bordeaux, a reminder of better days. For the next week he was known as Peter Petrus.

  Still, even at this top-ranked medical institution, they did not immediately suspect Alzheimer’s disease, even after reviewing the diagnosis and charts from the Bethesda Naval Center. Back then, formal diagnosis for Alzheimer’s came only with autopsy. It would be a drawn-out process of elimination.

  On one trip to Hopkins, we were directed to the office of Dr. Peter Rabins, whose book, The 36-Hour Day, had become the bible for Alzheimer’s caregivers. Dr. Rabins interviewed us separately and then together. It was the first time I felt a clinician listened to me; the first time one had asked how I was holding up. Rabins sent Harvey for further psychological tests—more endless hours in monochromatic waiting rooms and exam rooms that felt like holding pens for the anxious families.