Slow Dancing with a Stranger Read online

  Many of his personal interests and passions grew out of a two-year medical sabbatical that he spent in Paris in the early 1980s, just one year after we married. Jason and I were invited to go along, but at the time I had just worked my way back on TV with a business show and Jason was busy with school. I never wanted to rely on Harvey financially and needed to work. We split expenses right down the middle on everything, including vacations. I worried that when his sabbatical was over, I would be unable to find another job.

  Our friends were shocked that we would even consider living apart so soon after marrying. To Harvey, they said, “How can you leave your new wife? Didn’t you learn anything from the demise of your second marriage?” To me, they demanded, “How can you let your husband go off to Paris alone when he won’t even wear a wedding ring?” We plunged ahead, agreeing to be a commuting couple.

  Solo in Paris, Harvey learned to love wine and began buying futures in 1982 Bordeaux, Burgundy, and Champagne. This indulgence on a researcher’s salary was made possible by a strong international currency market and a dollar at its highest in decades against the franc. It also helped that I was his silent partner and gave him carte blanche. He also bought himself a raven-blue BMW, which he kept in a garage in a small residential neighborhood alongside the Seine in the 16th arrondissement.

  During the day, he walked for miles, exploring the alleyways and side streets, stopping for a cup of coffee or a glass of wine. He was always looking to duck into an interesting store and chat with the owner or strike up a conversation with someone walking down the street. He usually ended with dinner at a family-run restaurant where the owner cooked him her specialties. On weekends, he got the car out, took to the autoroute, and detoured off through the countryside to visit the vineyards. He eagerly tasted the wine, asked questions, and learned to distinguish the subtle differences that made one vintage more valuable than another.

  A shrewd man, he built our wine collection the way he played the stock market, looking for a promising but overlooked wine whose value might grow in time. He bought first growths relatively cheap, shipped the crates to a U.S. distributor, and then stored the bottles in a specially built cellar with its own cooling system.

  Two years went by relatively quickly, and when Harvey returned back to the United States, it was his wine obsession and not a desire to improve my closet space that prompted our home renovation. I purposely turned a blind eye to our growing liquid investment. Such a perishable asset made me nervous, but it gave him great pleasure and a diversion from work. The wine cellar was the place Harvey retreated to decompress after a long day at work. He liked to spend an uninterrupted hour there turning the bottles and checking the air temperature and humidity. With such precise attention to detail, one would think that there would be wine journals with meticulous records, but Harvey wrote little down and kept the base prices in his head. Was it the arrogance we all share that our minds won’t fail us? If he found one bottle with a bad cork, it became an excuse to throw an impromptu dinner party with wine tasting as the centerpiece of conversation.

  At heart, we were homebodies comfortable with each other and a few close friends who tolerated that we both worked ungodly hours—I was out the door at 3:00 A.M. to prepare for a morning newscast and he was in the hospital by six. We dressed and partied only when professionally obligated to make an appearance, and usually attended separate events, he going to gatherings with scientists and his NIH colleagues and I with my friends and colleagues in the media and business world.

  In this way, we were not unlike many working couples who have separate professional acquaintances and a small cadre of friends shared in common. And yet, this very dynamic kept me from realizing that the issues I started noticing at home were being mirrored on the job.

  At work, his colleagues assumed his behavior might be related to personal problems at home, while I wondered if the changes in mood were due to pressures at work. This situation is not uncommon in early-onset cases. These cases don’t fit the face of Alzheimer’s: too young, too physically fit, and too self-aware for anyone to realize that something is not quite right. Work that was routine becomes exhausting because the disease infiltrates and destroys the neural connections responsible for executive function in the brain. The hippocampus goes into overdrive, and the process of hiding out begins.

  Where Harvey most closely fit the stereotype of the brilliant but eccentric scientist was the way he maintained his office. Sometimes people walked by just to take a look. Most days, it was impossible to enter. People poked their heads in, stunned to see the floor completely covered with papers and documents. Books, charts for his latest paper, the most recent journals opened haphazardly to a piece he was reading, all of it piled in towers that teetered, threatening to crash at any moment if someone got too close. Amid this chaos, Harvey ruled, propelled by a remarkable ability to remember exactly where everything was located. Despite the apparent lack of order, until he got sick, he was always able to retrieve from the pile the single article he needed to make a point.

  I rarely visited his office—he had patients and his research to tend to—but when I did, I was absolutely mortified by what I saw. Harvey was a man so exacting about his research that he used himself as a control in experiments. Yet he worked in an office that looked like robbers had ransacked it. I could never tell Harvey what to do, so I just suggested he keep his office door shut when he wasn’t there.

  An early sign that something was amiss came during one of my infrequent visits to his office, as I watched him struggle unsuccessfully to find something in the piles of documents. Unread periodicals and untouched newspapers that he had once devoured started stacking up at home, as his ability to concentrate for extended periods waned. Struggling to maintain control, Harvey made such a financial mess that it took me four years to clean up our accounts. Second marriages typically mean separate bank accounts, which mitigated some of the damage. But even now, I still find outdated checks that were never cashed and documents squirreled away in the strangest places from his paranoid days.

  The latest research supports the idea that one of the first signs of dementia is a change in behavior. If someone has always forgotten names, then forgetting names is not necessarily a sign of dementia. Rather, it is a decline in one’s typical abilities, a change from the usual behavior. It was not the lack of order in Harvey’s office that signaled problems. Rather, it was Harvey looking around his office in confusion, overwhelmed by the chaos that had never fazed him before, which signaled that something was going terribly wrong.

  He had a reputation at work of being brilliant but sometimes prickly, and later many of his colleagues cited his personality quirks as one reason it took so long to notice his decline. At the beginning of his illness, his moodiness just seemed like a more intense version of the way he sometimes was, moving quickly between charm and impatience. When he wanted to persuade someone, he could be the most engaging man in the room, animated and charismatic. He smiled often, telling jokes or making clever remarks. There was an art to the way he moved, filling the room with his intellect and personality, putting his hand on someone’s shoulder to suggest complicity in whatever he was saying. He had a way of making people feel that they were part of his team; that they were all in the fight together. But when someone disagreed with him and he didn’t think they had made a good case, he could make a cutting remark that stung. Not everyone could keep up with his rapid train of thought, his depth of knowledge—which came from years of studying the smallest details of what made one leukemia different from another—or his fiercely worded arguments.

  In a debate over patient care, Harvey was formidable and rarely gave in once he had made up his mind about what to do. A colleague once remarked that if you wanted to change an order that Harvey had given, you had to go into the meeting prepared for a fight. Harvey rarely gave in.

  As time went on and the disease slowly progressed, changes in Harvey’s behavior became noticeable. When they pressed him to give h
is opinion, he faltered. He had trouble remembering clinical details they had just told him a few minutes before or he gave answers that were irrelevant to the discussion. One time when someone asked him about the level of potassium in a patient, Harvey started talking instead about vitamin K—K is the chemical symbol for potassium, which is totally different from the vitamin. The fellows started to suspect that something was wrong.

  Word that something was amiss with Harvey eventually reached the more senior doctors. One doctor said he dismissed the reports at first, saying he hadn’t noticed any changes and that the novice doctor must have caught the department chief on a bad day. But as more reports of Harvey losing his train of thought started to circulate, his colleagues started paying closer attention. At the beginning, most of them assumed stress at home or some professional frustration. They also considered depression or an adverse reaction to a medication.

  One day, I got a call from Henry Masur, NIH chief of critical care, who worked with Harvey. People were starting to talk, he told me. Harvey seemed distracted at work. He couldn’t concentrate. He started sentences but then trailed off, as if he had lost his train of thought. Masur told me that he had confronted Harvey about it earlier in the week and asked him what was going on, if he was taking any medications that might be affecting his cognitive abilities, if something was happening in his personal life that might be making it harder to concentrate at work.

  I was both distraught and relieved by the call. I had watched Harvey’s personality shift in small, incremental ways. At first, I assumed that he was able to pull himself together at work. After all, being with patients was Harvey’s lifeblood. He was the type of doctor who was called by pediatrics to give painful spinal taps to children because of his expertise and caring bedside manner. He took the time to explain to patients the goals of his research, and they offered to enroll in trials testing his ideas. When the cutting-edge therapies stopped working, Harvey was the one who went back to the hospital at night with wine and meals I had cooked, to spend time talking with his dying patients.

  I always attributed his tenacity and desire to become a doctor to his overwhelming feelings of hopelessness as an only child of two parents who were chronically and seriously ill throughout his youth—a child who walked the mile from school to the hospital to visit them, doing his homework by their bedside, and then when visiting hours were over, making his way back home to let himself into a dark and lonely apartment. By age fourteen, when he broke his arm playing baseball and a doctor fixed it, he had become determined to be a doctor and save lives.

  Now I was learning that the scaffolding of Harvey’s identity—his work as a doctor—was falling apart. Masur reported to me that when confronted, Harvey responded that lately he was not feeling well and he had already been to the doctor. This wasn’t true. Harvey continued to refuse my entreaties that he see a doctor. His personality was also shifting from type A in overdrive to something more aggressive, egocentric, and emotionally abusive. It took all Harvey’s mental capacity to hold himself together at work, so he exploded at home.

  A confrontation at Thanksgiving, pardonable only in hindsight, left a bitter aftertaste in our memories as a family. My son, Jason, brought his fiancée, Dana, to join in an intimate family celebration. The china, silver, and crystal gleamed atop linens specially chosen to match the flower arrangement of giant chrysanthemums. Everything seemed fine, with the conversation polite and low-key. Then we sat down to dinner. Jason offered to assist by carving the turkey, and without warning, Harvey started to yell. Brandishing the carving knife in his hand, Harvey warned Jason not to try to usurp his role as head of the family. Shocked, we sat in stunned silence, unable to move. Then just as suddenly, Harvey dropped the knife on the table and stormed out of the dining room, grabbing the car keys hanging near the door and heading out into the chilly night without a jacket. I let him go. Long after midnight, after everyone else had left, Harvey came home. He never explained what had triggered his extreme behavior, and he offered no apology.

  This was the pendulum along which our lives now swung: months of lucidity punctured by sudden, inexplicable rages. I didn’t know what to do.

  Was my mind playing tricks? Was whatever haunted Harvey also taunting me?

  I clung to the notion that things might somehow get better. Instead, they got worse. Six months after the incident at Thanksgiving, the family gathered again, this time for Jason and Dana’s rehearsal dinner and wedding. The dinner was held at a popular restaurant selected by my ex-husband. Family and friends had gathered from all over the country to celebrate, and I did not want a repeat of the Thanksgiving fiasco. We all agreed that only Dana’s parents, Jason’s biological father, and I would offer toasts. Harvey arrived late with Mark, who didn’t seem to tune into his dad’s subtle, yet erratic behavior. Even though it was mid-March and the room cold, Harvey sweated profusely and refused to make eye contact.

  The evening started out smoothly, but no sooner did Dana’s father sit down after toasting the bride and groom than Harvey abruptly stood up and started speaking. He spoke forcefully, as he always did when addressing a crowd, but his facial expression was wooden. He stared straight ahead and kept wiping his forehead. Every so often, he suddenly stopped speaking, giving the impression that he was about to sit down. Invariably, he just started talking again.

  Not once did Harvey mention the joy of the occasion. Instead, he talked on and on about a distant cousin that he hadn’t seen in years and who he learned had just died. The guests listened in stunned silence, unsure of what to make of the strange speech and Harvey’s odd behavior.

  I finally took action. During one of his short pauses, I stood up and started to applaud, hoping to stop Harvey from continuing to talk. Then I asked everyone to join me in a toast to the new couple. Everyone raised their glass. Harvey sat down stiffly, staring straight ahead. As soon as I could, I went to Jason and Dana to apologize, but it is hard to undo a moment like that.

  I stayed behind at the hotel that night to take care of my elderly mother while Harvey and Mark went home. I tried to anticipate how I could intervene if Harvey didn’t know where to go after he escorted my mother down the aisle to her seat. Would he remember he had to continue to the front to join the best man? Or would he turn around and walk or do something embarrassing, like address the audience? I barely slept, thinking about how many things might go wrong.

  I had brought a backup tux with me in case Harvey did not dress appropriately, and the next morning it came in handy. Harvey arrived at the hotel wearing a regular shirt and tie under the tux jacket, no bow tie, and sporty shoes—another giveaway that the sharp dresser I knew was no more. I helped him dress for the occasion, hoping when he saw himself in the formal clothes, it might remind him of how to act.

  At the wedding, Harvey made it down the aisle and through the ceremony. During dinner, I sat next to him, sipping from his wine glass so he would not drink too much and deflecting questions when he seemed confused or unable to answer. Toward the end of the evening, he announced that he was driving Mark to a cousin’s home in New Jersey and returning the same night. I begged him not to go, fearing that after he dropped off his son, he might become disoriented and get lost. At 3:00 A.M. frantic that he had not returned, I filed a missing persons report to the New Jersey state police. A few hours later, Harvey walked in the door, disheveled, sweaty, and confused. He said the police caught him speeding on the highway. Then without further discussion, he got into bed with the tux still on and fell asleep.

  I didn’t want to admit to Masur—or to myself—that these kinds of events were increasingly common. Rightly, he would feel professionally obligated to report everything I said to Harvey’s superiors. Harvey’s entire life had been spent taking care of others. His research efforts were devoted to offering dying cancer patients more quality of life and more time. Now that he was struggling, didn’t he deserve the same consideration? I needed to find out what was wrong and still protect Harvey. When Masur propos
ed more precise neurological workups and outside experts rather than colleagues running tests, I was on board.

  Over the next few weeks, Masur shared a list of possible diagnoses. Harvey was prematurely gray, so some of his colleagues speculated that he might have pernicious anemia. Based on his symptoms, other conditions that came to mind were a brain tumor, Lyme disease, and even mad cow disease from one of his trips to London.

  But in all those conversations, one thing we never discussed was Alzheimer’s disease. Early-onset cases were not immediately considered in someone only fifty-six years old. I had to learn firsthand that doctors avoid giving an Alzheimer’s diagnosis, preferring to first rule out other conditions. Moreover, twenty years ago when Harvey first began showing symptoms, Alzheimer’s was steeped in stigma. People did not like to discuss it. Even for Harvey’s colleagues, what was happening didn’t make sense. None of it did.

  Despite my growing concern and that of his colleagues, it wasn’t easy to get Harvey to see a specialist. It is hard enough to get any loved one in the early stages of a disease to see a doctor, especially when the symptoms don’t have a specific name or apparent cause. My efforts were hampered by the fact that Harvey had been making clinical decisions for other people all his life and was certain that he could make one for himself. I asked our attorney and close personal friend to persuade Harvey that only a clean bill of health from a neurologist could get them off his back.

  I had to talk our way to the front of the line for an appointment with a top neurologist in Washington, D.C., who was about to retire. As a professional courtesy, he agreed to see him. I will never forget that appointment. A doctor’s visit that took less than forty-five minutes kept us from being able to get my husband’s condition accurately diagnosed for more than two years. The two of them interacted as fellow medical professionals, leaving me as the interloper, a concerned wife who was overreacting. When we arrived at the doctor’s office, his citations and awards were packed. What happened next complicated everything. Harvey told him one account of what was going on, and I set out to tell another.