Slow Dancing with a Stranger (4 page)

As soon as we left the doctor's office with report in hand, Harvey attacked. He warned me not to insult him again. His basic message was that what went on at work was his business and not mine. That fateful encounter left me tiptoeing carefully around Harvey, who grew even more headstrong and obstinate after his escape with a clean bill of health. I knew that Harvey had been on his best behavior with the neurologist and managed to pull it together enough to make it through the examination, but I was certain that eventually the charade would catch up with him.

Unfortunately, it was not a conscious game for Harvey. He was in denial about any deficit, his skill as a diagnostician undermined by the unperceived creep of mild cognitive impairment. Yet he volunteered that he had temporarily taken himself off patient care as a precaution until he felt better. My son's wife, Dana, was working on her master's thesis in social work and interning at NIH. She observed Harvey in the NIH library, staring at his research and then disappearing into the stacks. Dana reported to me that she often walked back with him to his office under the pretense she was headed to the same floor in the Clinical Center.

My work suffered as I tried to keep up with my demanding job while running interference for Harvey. I lived every day anticipating a crisis, running through what-if scenarios before I left in the morning and before I went to sleep at night. It was hard to concentrate on what was happening at work or get excited about new assignments. I jumped each time the phone rang, assuming the worst. There was no time for living in denial with him. I was now the point person for two, with one of the two resisting my efforts every step of the way.

A
few weeks after the doctor's appointment, my fears were realized. Harvey had been asked to give a major talk on leukemia months earlier. Now that date was suddenly upon us. I begged Harvey not to give the speech. At home, the signs were even more pronounced than they were at work. Buttressed by the identity that had been the framework of his entire life, Harvey still was reasonably cogent when he was with his peers. Even when he could not retain details about a patient's case that someone had told him ten minutes earlier, he was able to look at a slide and talk about the disease. This is how smart people hide out in the early stages of dementia.

But at home he seemed lost. He sat in the chair in our kitchen nook after dinner, frantically sorting through documents related to his research or dumping out his slide deck and starting over. Now he faced the prospect of standing up in front of a room filled with professionals. Speeches given at conferences are an important part of the scientific process. They are meant to be challenged, giving scientists a chance to probe the data and push one another about their theories. I knew Harvey would be fortunate if he made it through the entire speech, let alone handled questions from the audience. Yet the doctor's report from a few weeks earlier silenced me when I should have spoken up. I felt crushed that the doctor had dismissed my concerns but fearful that if I went public, my actions might ruin Harvey's reputation. So I took the middle path. I did not share my concerns, but decided to go with him that day in case something went wrong.

The lecture before four hundred doctors was held in a big ballroom at a hotel in downtown Bethesda, Maryland, not far from where we lived. In the good old days, Harvey typically would run late for such a conference, arriving five minutes before he was going to go on stage but still able to present his slides, data, and conclusions as if he had been preparing for hours. Those days were behind us. I told Harvey that I would drive him. In a sign that should have tipped me off that we should cancel the appearance, Harvey agreed.

The issue of Harvey continuing to drive was an ongoing area of contention between us. Imagine what it was like trying to take a sports car away from a fifty-six-year-old man. The Porsche represented not only a beautiful piece of engineering that gave Harvey pleasure to drive but a symbol of his personal freedom and independence. But as Harvey's symptoms worsened, my worries about him driving grew. In addition to the car being stolen and then recovered, there had already been a number of episodes of lost keys found in the ignition. A few months earlier, an unexplained accident had ended with his Porsche straddling the median strip on the highway. I didn't even learn about it until two days later, when I got a call from a towing company about the charge for extracting the car and taking it to the dealership. Fortunately, no one was hurt, but what shocked me more was that Harvey didn't remember what had happened.

Another time, with my son and his wife watching from the front steps of our house, Harvey got in the car and shifted into gear but forgot what to do next. Instead of backing down the driveway, the car lurched forward in jerking motions. Jason yelled frantically, trying to tell Harvey how to stop. Luckily, the car smashed into a line of tall spruce trees that bordered a high embankment down to the main street. It was the only thing that kept the car from flipping over.

Despite the evidence of the damaged car, Harvey still refused to admit he was having trouble. Many evenings, the short drive from the NIH to our home, a route that Harvey had driven on autopilot for decades, took much longer. When I confronted Harvey, he angrily refused to discuss the matter further.

When I suggested he stop driving, Harvey shut down emotionally. He ignored me or left the room in anger. I started to think that I should get the keys away from him before he seriously hurt himself or someone else, but I was foiled at every turn.

Two weeks earlier, Harvey had gone to the Department of Motor Vehicles to get his license renewed. I was sure he would never pass and the problem would be resolved. But glimmers of the kind of person Harvey had been remained. The clerk behind the counter found him charming and amusing. She kept commenting on how much he looked like the comedian Steve Martin. When he hesitated during the test, unsure what the correct answer was, instead of letting him fail, the clerk gave him prompts for the correct answer. To sympathetic outsiders like her, nothing seemed dramatically amiss because Harvey did not look sick. I knew better.

In fact, one of my main purposes in visiting the neurologist was to enlist outside support for my belief that Harvey shouldn't drive anymore. Harvey had recently offered a ride home to a colleague who lived in the neighborhood. Simple directions became a maze of missed turns that they both joked off as being too preoccupied in their conversation. Harvey's admission that his reaction time behind the wheel seemed slow signaled like a caution light that time was up trying to honor his independence. Someone could get seriously hurt.

After the unsuccessful meeting with the neurologist, I decided to take action. I slipped into the garage one night and pulled the plugs on what I thought were the lines to the battery and circuitry to permanently cripple his car. For the next five years, I told Harvey that his car was in the shop getting repaired. It was an easy fib to maintain. Even then, Harvey didn't have the presence of mind to check the garage himself where the car remained.

The morning of the big lecture, he didn't even ask to drive. He slid into the passenger seat and waited in stony silence for me to take charge. The drive to the hotel was short. Harvey clutched his slide decks on his lap, afraid to let them out of his sight after briefly failing to locate them that morning. I was reluctant to just drop him off at the entrance of the hotel for fear that he might get lost. Fortunately I spotted a member of his staff and commandeered help for Harvey with his briefcase and slide decks. We arranged a place to meet afterward. I parked the car and slipped into the back of the ballroom, standing where he would not see me.

In every Alzheimer's case, there is invariably a public episode that drives home the harsh reality and makes denial no longer an option professionally. That scenario is true for every public figure and celebrity who has ever been forced to own up to the disease. We applaud them as courageous, but they had no choice.

For me and for his increasingly concerned colleagues at work, Harvey's speech that day was such an episode. It was painful watching this brilliant man, renowned for his expertise in blood cancers, fumbling with his papers. Though he held the typed speech in front of him, he lost his place less than halfway through and never recovered. There were awkward pauses while he tried to retrace the steps of his argument. I heard attendees shifting in their seats, rustling papers, craning their necks to see him and try to understand what was going on. At one point, an uncomfortable rumble of laughter, a kind of snickering, seemed to wave across the ballroom. I wanted to stand up and shout to this room full of doctors with fancy titles and prestigious sinecures, supposedly trained in spotting the clinical symptoms of a disease, “Can't you see this man is sick and needs help?” But I was so afraid of embarrassing Harvey even more that I stood there silently, waiting for it to be over. Finally, one of the organizers gently led him to his seat. He never finished the speech.

On the drive back from the hotel, I felt bitter and angry about what had just happened. When we walked into the house, the first thing I noticed on the table in the front hallway was a bill from the neurologist who had found nothing wrong with Harvey. I crumpled the bill into a wad and threw it in the trash. I refused to pay.

Despite my regular talks with Henry Masur, I did not know
that a few of Harvey's colleagues had started talking to the administration-level managers about easing him out of his job. At the very least, they insisted, management needed to get Harvey thoroughly examined. In the lab that Harvey was nominally running, the day-to-day responsibilities fell to his two deputies. It was hard for them to do their own work and Harvey's too. At the suggestion of these colleagues, Harvey's boss attended the speech. He was shocked by Harvey's demeanor and performance.

The next morning, Harvey's boss called him into the office and told him that under no circumstances was he allowed to see patients. He needed a clean bill of health and the last report didn't count. Harvey promised to limit his work to the lab. His two deputies were also called to the front office and assigned to keep an eye on him. But right after Harvey agreed to the new arrangement, he seemed to forget it. It was an almost impossible task to keep Harvey in the lab and away from the wards.

Harvey wasn't responsible only for himself and the patients. There were fellows and graduate students whose career advancement depended on Harvey. They needed his help to supervise their research and shepherd their papers through the review process and into publication in prestigious journals. They wanted him to mentor them. All of this he was now unable to do. Morale in the lab started to flag.

Less than two weeks after Harvey's final speech, he was supposed to fly to London for a meeting of the FAB—for French, American, and British—leukemia classification committee. Harvey had been invited to join years back, and it was one of the highlights of his career. There was one other American on the committee; everyone else was based in Europe. This meant regular trips to Paris, his favorite city, and to London, a city he also had gotten to know very well.

Harvey wanted to attend the meeting in London, but after the confusion he had exhibited during the speech, I was terribly concerned. He rejected my offer to come with him. The situation had the makings of a disaster.

This was the most challenging point in his illness, when Harvey stood on the border between who he had always been and what would characterize the rest of his life. For a while, he had been able to keep one foot on each side. There were days when he was still his old self, with flashes of the intelligent and funny Harvey. He would make a joke or refer to something that happened in the news. He could make conversation, and he had strong opinions about what he wanted to do. But then, without warning, his eyes would glaze over and he would get a distant, vacant expression. He seemed to be looking off in the distance, perhaps at the fate that awaited him. I worried that he would not be able to keep himself together for the long overseas flight. Harvey still maintained the demeanor of a high-functioning man. If he fell apart, who would be there to help him?

I had lost whatever influence I once had over him. He was far enough into the early stages of mild cognitive impairment to be obstinate and unwilling to listen to reason. My tears and pleading that he should stay home fell on deaf ears. The visit to the neurologist who had told Harvey he was fine turned out to be the one episode he did not forget. Now I had lost my standing as his defender. Harvey treated me as his enemy; someone he could not trust. By this point, we were the only ones living at home. There were no allies to help me dissuade him from leaving for London.

A dementing mind sees only its own reality.

The morning of the flight, he frenetically packed his bags. The process took two hours because he kept unpacking and repacking, yet he still managed to forget to take his grooming necessities, which he left scattered on the bathroom counter. Pants and shirts were strewn all over the bed. I offered to help, but he slammed the door. I stood quietly outside in the foyer in case he called for me. The next thing I knew, a cab was honking at the front door. I confronted Harvey in the doorway, saying that if he was leaving, he should first check to make sure he had his passport, his plane reservation, a ziplock bag of pounds and francs that he carried on every trip, and his itinerary. Everything was there. Rote memory was still sufficiently intact for him to give me a good-bye kiss. I reminded him to call me when he landed.

He managed to get himself on the plane, and the hosts of the committee meeting arranged for a driver to pick him up at the airport. They were all staying together in a small boarding house in Kensington, a place they had stayed during other meetings in London. The familiarity of the place seemed to ease Harvey's agitation, at least at first. But soon after he arrived, things started to go wrong.