Slow Dancing with a Stranger

Meryl Comer

• Publisher: HarperOne
• Year: 2014
• ISBN:
  9780062130839
• Topic: Medizin
• Subtopic: Medizinische Biographien

A New York Times Bestseller

Emmy-award winning broadcast journalist and leading Alzheimer's advocate Meryl Comer's Slow Dancing With a Stranger is a profoundly personal, unflinching account of her husband's battle with Alzheimer's disease that serves as a much-needed wake-up call to better understand and address a progressive and deadly affliction.

When Meryl Comer's husband Harvey Gralnick was diagnosed with early onset Alzheimer's disease in 1996, she watched as the man who headed hematology and oncology research at the National Institutes of Health started to misplace important documents and forget clinical details that had once been cataloged encyclopedically in his mind. With harrowing honesty, she brings readers face to face with this devastating condition and its effects on its victims and those who care for them. Detailing the daily realities and overwhelming responsibilities of caregiving, Comer sheds intensive light on this national health crisis, using her personal experiences—the mistakes and the breakthroughs—to put a face to a misunderstood disease, while revealing the facts everyone needs to know.

Pragmatic and relentless, Meryl has dedicated herself to fighting Alzheimer's and raising public awareness. "Nothing I do is really about me; it's all about making sure no one ends up like me, " she writes. Deeply personal and illuminating, Slow Dancing With a Stranger offers insight and guidance for navigating Alzheimer's challenges. It is also an urgent call to action for intensive research and a warning that we must prepare for the future, instead of being controlled by a disease and a healthcare system unable to fight it.

ONE

EARLY SIGNS

This is not the first time I have sat staring at the computer screen wondering how to begin or what to say. As a former TV news reporter, I know how to write succinctly about complex issues. I spent most of my career finding ways to allow people to quickly grasp whatever was happening that day.

Perhaps what stops me is a feeling I cannot shake—that it is premature, even emotionally offensive, to write an obituary while he is still alive. We do it all the time in network news, whenever a notable is seriously ill. That way, we are ready when the time comes to break the sad headlines with a touching tribute that invites us all to share vicarious memories. But in this case, who really cares?—except our immediate family, who also lives in limbo. The man I knew, loved, and married has been absent and anonymous for years, even though he lives at home and is cared for by me. Close friends and coworkers abandoned us long ago. It was too disconcerting to walk through our door and see someone who was once just like them being destroyed in slow motion by an insidious disease for which there is no cure. I understand how they feel, even though I was left behind too and I’m not sick. How do I write about a twenty-year gaping hole in our lives—an intimate part of our history—when it’s still not over?

I am not sure when people at work realized that something was wrong with Harvey. But I remember vividly how his behavior at home changed.

This commanding, strong-willed, yet considerate man became upset when things didn’t go his way. The slightest thing set him off. If he couldn’t find his wallet, keys, or papers, accusations flew that someone, anyone at home but Harvey, had taken them. When I mentioned the change in his behavior, he erupted in anger. In the face of his wrath, I went silent, infuriating him even more. These episodes usually ended with Harvey storming out, slamming the front door and driving off. It was painful, and I wondered if our marriage was in trouble.

Now I know that this behavior is common in the early stages of the disease, when symptoms are emerging but not yet full blown. The Academy of Neurology reports that the pressures on family life due to Alzheimer’s begin long before active dementia is apparent, and this was my experience too. Individuals start to privately fight the earliest stages of dementia but are unable to articulate what is wrong. The stress on them and their loved ones is overwhelming.

It is impossible to detect exactly when this process starts, and it was especially difficult in the case of someone like Harvey. He was the type of person who always got noticed. When he walked in the room, you knew he was there.

At the National Institutes of Health, where he had worked since the 1960s, most of the male scientists wore khakis, a wrinkled non-iron shirt, and a blue blazer to work every day. Harvey was always impeccably dressed in the latest styles. As a high school student, he had worked in a men’s clothing shop to earn extra money, and his father never let him spend the cash on clothes. Harvey made up for lost time as an adult. Most days, he had to wear a white lab coat but still managed to assert his sartorial taste with English cuffed shirts, French silk ties, and the most flamboyant socks peeking above his soft Italian suede or leather loafers.

Harvey was on the international scientific circuit and traveled frequently to Europe to attend conferences and present papers. He always returned home with a refrigerated box containing medical samples and, tucked amid the dry ice, tins of foie gras, Petrossian caviar, and smoked salmon from Fauchon, a gourmet food shop on the right bank of the Seine. His suitcase was a gourmand’s treasure trove: boxes of Richart handmade chocolate, macarons from Ladurée on the Champs-Élysées, and at least two or three bottles of wine wrapped in his clothes. There were new ties, the old ones stained purple from a tasting tour in Burgundy or Bordeaux—his rationale for indulging himself with even more ties. He drove a canary yellow 911 Porsche to work every day, which he enjoyed so much that I not so jokingly referred to it as his mistress. It glimmered in the parking lot at the NIH, a foreign traveler in a land where most of the other cars were sensible four-door sedans. In the evenings, after a long day caring for patients or working in the lab, he liked to hit the gas pedal. I could hear the distinctive engine roar a block away as he entered our street—a ten-minute route he drove for thirty-one years, until the disease impaired his ability to find his way home.

From the beginning, Harvey and I used to joke that it was amazing we found each other. He had a son, Mark, from a first marriage that ended in divorce. His second wife left unannounced one day, taking everything with her. It left him bitter and untrusting. I was a single mother with a five-year-old son. I rarely had time or inclination to socialize, but one day a neighbor asked me to drop by her house on a Sunday afternoon to meet an eligible doctor friend who was there to watch a football game. At first I demurred, but she persisted. I gave in but told her I was coming with my son and wasn’t going to put on makeup.

It has been almost forty years since the day we met, and even now I remember every detail. Harvey, long and lean, was dressed in a forest green wool turtleneck, corduroy slacks, and well-worn hiking boots. He was more distinguished looking than handsome, but it was hard to ignore his steely blue eyes. He was smoking a hand-carved Algerian briar pipe that wafted a woodsy aroma of Dunhill #6. Jason and I arrived at the house during a dramatic fourth-quarter play between the New York Giants and the Green Bay Packers, and Harvey, a Giants fan, was distracted. He invited Jason to sit next to him on the couch. The image of the two of them sitting companionably together gave me a sharp pang of longing. This was what I wanted: a father for my son and a family life. Confused by my feelings, I retreated to the kitchen. My five-year-old was the one who invited Harvey to come over to our house.

For our first date a week later, we agreed that Harvey would stop by after I returned home from anchoring the ten o’clock news. He arrived shortly after the sitter left, and Jason was already sound asleep. I headed for the kitchen to get him a drink while he settled onto my couch. When I returned less than five minutes later, he was sound asleep, having started his day at the hospital around six in the morning. I tried to wake him, but he didn’t budge. So I grabbed a throw blanket, draped it over him, turned off the lights, and went up to bed. When I came down in the morning, he was gone. No note—just gone.

Later, we joked that a relationship would never work. We had very different lives. Despite the uncertainty, neither of us wanted to end things. Then something happened that crystallized for me why. Four months into our relationship, I got a call late one afternoon, just two weeks before Jason and I were to join my mother for my brother Steve’s graduation from Antioch College. It was the local police saying that my brother had been reported missing and later found in a wooded area near campus, dead of a self-inflicted gunshot wound to the head. The police needed me to identify the body. I didn’t want to disturb Harvey at work for fear of asking too much from a new relationship. I left a brief voice message saying that I had to go out of town unexpectedly. I was packing to leave when Harvey showed up at the front door. He offered to stay with Jason or come with me to help. Three days later, my brother was buried under a tree, next to the red stable where he used to teach children with physical disabilities to ride. I emptied out his apartment, packed a truck with his things, and adopted his mongrel dog, Sash, whom he had left behind with extra food, water, and a note. “I can’t lock my heart away in a box for safekeeping,” he wrote, referring to a love affair gone sour, as we mourned our loss. My mother flew back to Washington alone. Harvey showed up with a cooler under his arm, and we drove back in the truck. He said he didn’t want me to go it alone. Six months later, he moved in with us.

Four years later, we were married in the empty living room of an old Spanish-style home we bought together and planned to renovate. We invited thirty guests, including the neighbor who had introduced us. Harvey showed up late to his own wedding; he was tending to a very sick patient at the NIH.

The truth is that Harvey’s research and his patients took precedence throughout our marriage. I grew used to him missing holidays, canceling vacations, and rescheduling dinner with friends. He was not generous with expressions of love, which is one reason I treasured a letter he wrote to me aboard a night flight to Paris shortly after we met. Tucked behind a fading, yet favorite photo and the last one of Harvey well, it read: “Dearest M,”—M was his nickname for me—“I miss you terribly and I am only 2½ hours away from you. I am not sure that I express my true feelings to you, but the inner euphoria and excitement is something I have never experienced before. The seat next to me is empty, and I have turned to it hoping that somehow you will be there.”

Given our work and travel schedules, our favorite times were the weekends, when we stayed home and read the Sunday New York Times together. When we did go out in the evening, Harvey always took charge of ordering the wine. In a French restaurant, he spoke to the waiters in excellent French, which he taught himself by listening to Foreign Service language tapes while out for his daily long-distance run. It was one thing we did together with our dog, Sash, whom Harvey spoiled and from whom he got unconditional love in return. Our six-mile runs didn’t exactly promote togetherness, though. Harvey was always two hundred yards ahead of me, mesmerized in his next language lesson or deep in thought about an experiment that hadn’t lived up to his expectations.

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 his 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 per...