Patient H.M. (34 page)

T
he neuroanatomist Jacopo Annese usually drove a red Porsche 944, but on a summer day in 2006 he was a passenger in an unmemorable sedan, watching the redbrick husks of old paper mills glide by his window. He was on Main Street in Windsor Locks, Connecticut, a few blocks from Bickford Health Care Center, where he was going to meet Henry for the first time. Bickford Health Care Center was a single-level complex that used to be a motel. A little canal ran alongside it, as did some railroad tracks. It was west of a highway. Annese was surprised, to be honest, that Suzanne Corkin, who was driving, didn't make him wear a bag over his head. Even before he met her, Annese knew by reputation how protective of her prized test subject Corkin was, vetting researchers exhaustively, demanding the signing of nondisclosure contracts, disallowing tape recorders, that sort of thing. She'd built a good portion of her career on her access to Henry and wouldn't let just anybody in.

But when Annese requested that she set up this meeting, when he told her that he'd like to see Henry at least once while Henry was still alive, she consented.

The car pulled into the parking lot of the nursing home and nosed into an empty space. Annese and Corkin got out and walked inside together into the lobby. Annese got his first glimpse of Henry there: an old man, overweight, sitting in a wheelchair. Henry looked up at them with a dull expression on his face and no hint of recognition in his eyes. He responded to their greetings, but just barely. He was still on massive daily doses of anticonvulsants, as well as antipsychotics, anxiolytics, antidepressants, blood thinners, and various other medications including Xanax, Seroquel, Oleptro, Mellaril. He'd fallen and broken his ankle at least twice in the past two decades and had his hip replaced in 1986. His bones were brittle. He'd had a stroke two years before. Profoundly amnesic since 1953, Henry now also suffered from dementia, which brought with it a general blunting of his intellectual faculties, a blunting only exacerbated by all his medications. He had become what Corkin described as a “pharmacy in a wheelchair.” Incidentally, Henry's increasing decrepitude had itself suggested some new experiments to Corkin. During another meeting, she'd quizzed Henry on how old he thought he was. He guessed that he was perhaps in his thirties. Then she handed him a mirror.

“What do you think about how you look?” she asked while he stared back at his own wrinkled, uncomprehending face.

“I'm not a boy,” he said eventually.

Corkin and Annese wheeled him to the cafeteria, where Henry drank a smoothie from a straw. Annese was a voluble, extroverted man and tried to engage Henry in conversation, but Henry hardly responded. He sat and drank mostly in silence. Eventually somebody took the smoothie away, and Annese and Corkin got up and wheeled Henry back to his room. They said goodbye to him, speaking loudly and firmly to make sure he understood. His hearing was going, too. He'd suffered from severe tinnitus since 1986, probably a side effect of Dilantin, and it sometimes got so bad—a relentless, inescapable, excruciating buzzing sound at all hours of the day and night—that he would plead with the staff at the nursing home to bring him a gun so he could blow his brains out.

Henry's brain, of course, was what this visit was all about. It was why Corkin had allowed Annese to come here, why she had parted the veil. She needed a man of Annese's particular skills. Annese, for his part, was grateful to Corkin for letting him in, glad to get a chance to meet Henry and spend a little time around him. Ever since graduate school, he'd found anonymous cadavers the hardest to harvest. It made it much easier if you knew the person as a person before you dealt with the person as a corpse.

Scientists had been trying to get a look inside Henry's skull almost ever since the moment my grandfather replaced the bone plugs and sealed it back up. In the first three decades following the operation, Henry received numerous CT scans and X-rays, and although these different technologies each had individual strengths and weaknesses, none were entirely satisfactory. They provided the scientists what was, at best, a blurred view of Henry's brain, like looking through a lense smeared with Vaseline.

Magnetic resonance imaging, a technology developed in the late 1970s and widely used at MIT throughout the 1980s, promised a clearer picture, but Henry didn't receive his first MRI scan until 1992. The delay was due to a fear that putting Henry in an MRI machine might cause him serious injury or even kill him, owing to the fact that MRI machines work through the use of extremely powerful electromagnets, and my grandfather had left behind several metal clips inside Henry. These clips were used to pinch shut veins and membranes in Henry's brain and to help determine the depths of his lesions in postoperative X-rays. When a person walks near an MRI machine holding a set of keys, those keys might be wrenched away and rocket at high velocity toward the interior of the machine. If the clips inside Henry's head were magnetic, something similar might happen to them, with obviously catastrophic consequences. Even if the clips were not magnetic, metallic objects of all sorts heat up when placed within the intense fields of an MRI machine, and if Henry's clips became too hot, that, too, could cause problems.

On the other hand, there was a good chance that the clips were safe. A neurosurgeon who had worked with my grandfather told Corkin that he believed the clips my grandfather used at the time he performed Henry's operation came from a manufacturer named Codman & Shurtleff, the same company that built my grandfather's custom trephines. A call to Codman & Shurtleff revealed that the clips they sold back in the early 1950s were typically made of either silver or tantalum, which are both nonmagnetic, and a review of journal articles indicated that nonmagnetic clips were unlikely to heat up to dangerous temperatures during MRI scans. There may have been a risk, then—it's hard to imagine there was not—but the team decided that if there was, it was one worth taking. So in May 1992, at Massachusetts General Hospital's Martinos Imaging Center, Henry lay down on a stretcher and was wheeled into the hollow, super-magnetized core of a 1.5-tesla MRI machine, where the steady thrum of rotating magnets filled his ears, loud enough to drown out the persistent buzzing of his tinnitus. He expressed no discomfort: The clips inside his head, apparently, were staying put and staying cool. Corkin would later say she hadn't thought there'd been a risk at all, even a slight one.

Behind a heavy door in an adjacent room, Corkin and her colleagues stared at a computer screen and watched with excitement as ghostly cross sections of Henry's brain began to appear, providing the best view anyone had had of it since my grandfather made his cuts four decades before. During those four decades, scientists performed hundreds of experiments with Henry, amassing what was already the most extensive amount of clinical data of any human research subject ever. The through line of all this research was an attempt to connect what they learned about Henry's amnesia and other deficits to what they knew about Henry's brain lesions. Finally they had a chance to see and measure those lesions rather than just depend on my grandfather's best guess about their size and scope or squint at the blurred images produced by more primitive neuroimaging technologies. After decades of measuring the effects that my grandfather's operation had on Henry's mind, they had their best opportunity yet to look at the lesions themselves, the causes of those effects. The biggest initial surprise of the scans, incidentally, was that the lesions appeared to be substantially
less
extensive than my grandfather had estimated in his postoperative report. Whereas he had described destroying all of Henry's hippocampal structures bilaterally over a distance of approximately eight centimeters, the MRI images indicated that there were at least two centimeters of preserved hippocampal tissue on both sides, a little more in the left hemisphere than the right. The scans also revealed that Henry's cerebellum, the part of the brain sitting just above the stem and responsible for general motor skills and coordination, was shrunken and in poor shape, presumably a result of the high levels of antiepileptic drugs Henry had been taking during most of his life. In addition, my grandfather's suction catheter destroyed most of Henry's olfactory cortex, which might have explained his pronounced and extensively documented difficulty in distinguishing between different scents.

As excited as Corkin and her colleagues were to see these scans, however, they were also somewhat frustrated by them. MRI was the state of the art in neuroimaging technology at the time, but it had limitations. The resolution was still far from ideal: A human brain typically contained about 1 billion neurons, while an MRI scan image had a resolution of only about 65,000 pixels. Areas that encompassed entire constellations of neurons and axons and dendrites were reduced to a few pixels.

You could spend a half century testing somebody—examining, poking, prodding, feeding—and come up with all sorts of theories to explain your findings. You could even put that person in an MRI machine and study the blurred images that appeared on your screen. But the brain, nestled in its fortress of bone, doesn't give up its secrets easily.

Eventually, Corkin knew, to truly understand the dimensions and effects of the cuts that my grandfather made in Henry's brain, another cut would have to be made.

On November 13, 1992, six months after that first MRI scan, Henry received two visitors at Bickford. One of them, Edward McGuire, was an attorney. The other was a man named Thomas F. Mooney. The purpose of their meeting was to help McGuire determine whether Mooney was a good candidate to become Henry's conservator, a role that would give Mooney legal control over Henry's medical care, among other things. A conservator is required when people have a debilitating condition such as dementia, schizophrenia, mental retardation, or, as in Henry's case, profound amnesia, which makes it impossible for them to make informed decisions regarding their own well-being. In most such cases, a parent acts as a de facto conservator. Henry's father had died decades before, and his mother had died in 1980. For the twelve years prior to this meeting, Henry was without a conservator or legal guardian of any sort. Suzanne Corkin, as well as some of the lawyers at MIT, were concerned about this.

Central to their concerns was the principle of informed consent. This was a principle that had evolved slowly over the course of the twentieth century, in fits and starts, often spurred forward by horrors such as those documented by the Nuremberg trials of the 1940s or the revelations about the Tuskegee Syphilis Experiment in the 1960s. By 1992, there was a clear consensus, not to mention a legal mandate, that required scientists who worked with human subjects to ensure that those subjects fully understood and agreed to any experiments they took part in. When research subjects had a condition that made providing their own consent difficult, that consent had to be obtained from a parent, conservator, or other legal guardian.

During the first two decades of experiments with Henry, consent was usually provided by Henry's mother, Elizabeth, or his father, Gustave, with Henry co-signing. By 1974, Gustave was dead and Elizabeth had dementia, so Lillian Herrick, the woman who'd been boarding Elizabeth and Henry at her home, started signing Henry's consent forms whenever she dropped him off at MIT. This unusual arrangement—Herrick was not Henry's conservator but, in a sense, his landlady—continued until Henry moved out of Herrick's home and into the Bickford center in 1980. From 1980 until 1992, the only person who signed Henry's consent forms was Henry himself.

Was Henry, on his own, capable of providing informed consent?

On the one hand, he was a bright individual, with an above-average IQ and intact reasoning abilities. On the other, the missing parts of Henry's brain affected him in ways that many experts would say made true consent impossible. For one thing, Henry could only hold on to the present moment for extremely short periods of time. This meant that a researcher attempting to gain consent from Henry faced the challenge of introducing herself, introducing the proposed experiment, explaining its methods, elucidating any possible risks, explaining the concept of informed consent, and then getting him to sign the consent form before any of that information flew out of his head. In addition, as soon as Henry signed the form he would forget everything about it, including the fact that he had consented at all, which meant that he would, some would argue, need to continually reconsent, over and over, as the experiment unfolded.

When it came to informed consent, however, an even more fundamental problem than Henry's amnesia was his passivity. Despite his occasional outbursts, Henry was, as Corkin and other researchers described him, almost always a docile and tractable man, and this docility and tractability surely was a result of his brain lesions, specifically his missing amygdala. My grandfather's operation had made Henry neurologically predisposed to consent to anything.

Many of the researchers who worked with Henry at MIT didn't appear to know much about what process was followed to obtain informed consent in his case. Instead they simply trusted that Corkin, the principal investigator, had made sure to follow proper protocol. “I'm sure Sue did,” the psychologist Nancy Hebben told me. “But I didn't have to specifically do something. There must have been a consent form of some sort.” Hebben was in charge of running the tests in the early 1980s on Henry's pain thresholds, tests that left little mysterious burns on his chest and forearms that Henry would later ask his nurses to explain. When I asked if she believed that Henry was capable of giving informed consent for those experiments, or any others for that matter, Hebben shook her head. “My guess is it would not have been Henry signing. How could you consider that informed consent? Because he wouldn't remember. I mean, he could understand. He wasn't a stupid man. So you could explain it and he could say, Oh yeah, I agree to do that. But then he wouldn't remember that he had agreed to do it….I mean, how could he possibly give informed consent?” Hebben assumed Corkin had arranged for somebody else to provide consent on Henry's behalf, but she was wrong. For at least a decade, including the period when Hebben did most of her work with him, Henry was the only person signing his consent forms.