Slow Dancing with a Stranger (3 page)

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 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 proposed 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.

Knowing what I was up against I came prepared, handing them both a typed list of symptoms that I and his colleagues at work had independently observed: high levels of irritability, attention distracted instead of focused, difficulty processing new information, frequent loss of train of thought, tendency to stop midsentence, and inability to recover. Then there were the erratic and unexplained behaviors like getting lost on the short drive to work—a route he had driven for more than twenty-five years—leaving the car running in front of the house to find it stolen when he came out an hour later, having to ask me where to sign a check, imagining that someone was stealing money from his account even when the bank statement matched, and losing endless time shuffling through his research papers. He complained of exhaustion but could not sleep, broke into cold sweats, said he was hungry but forgot to eat, was losing eye-hand coordination when we played tennis, repeatedly asked me the same question (requiring me to pretend it was the first time just to keep the peace).

What I did not write down and would only say when directly questioned by the neurologist was how much these behaviors were taking a toll on our marriage. They were, but Harvey was already agitated by the list of observations, and his cold stare prompted me to say only that the situation was tense. I had already offered numerous examples. Other problems—that he was no longer interested in sex, seemed lost at home, locked himself in the bathroom and couldn't figure his way out—went unmentioned.

The only way to keep Harvey from jumping out of his chair and bolting for the door was to relate everything back to a shared concern that “whatever” was going on with him threatened to dismantle his career. Then the doctor and Harvey disappeared into the examining room for no more than twenty minutes. When they returned, the doctor looked at me, while winking at Harvey, and said, “No need to worry. The examination shows no gross abnormalities. You've upset yourself unnecessarily. Your husband may be suffering from stress and a bit of depression. I have a prescription for the stress, and for the other, I recommend the two of you take a long-overdue vacation.” I panicked, knowing that Harvey was scheduled to give an important speech and had a trip to London planned to attend a medical meeting the following week. I desperately needed the doctor to intervene, but he was dismissive. On the way out he said to Harvey, “You're fine. You can do anything you want to do, but lighten up your caseload and have this prescription filled. And little lady, your husband is in great physical shape and knows exactly what he is doing. Get off his back. Time to relax.”

I was shocked by the doctor's refusal to respect what I had to say. In presenting the information, I had forced myself to speak in an analytic, almost detached manner, despite my rising panic at what was happening in my own home. Yet I was still being dismissed as some kind of overwrought, anxious spouse. Trying to keep my annoyance in check, I asked for a copy of the examination report before we left. I knew it was just a matter of time before NIH would require documentation that Harvey was still fit to work, and our lawyer would need to officially offer it for Harvey's record. A glance at Harvey's chart showed that my detailed notes plotting the dates of specific changes in behavior were missing. The neurologist had let professional courtesy extend too far. Noted and underlined in the report was the doctor's much more benign conclusion: “No gross abnormalities,” along with a prescription for an antipsychotic to treat depression.