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Permanent Present Tense

Page 36

by Suzanne Corkin


  Epilogue

  A week after Henry died, Mr. M. and his wife arranged for a funeral at Saint Mary’s Church in Windsor Locks, Connecticut, not far from Bickford. Henry’s body had been cremated. At the front of the church, an urn holding his ashes rested on a white pedestal surrounded by flowers. The front of the urn was etched with a cross and this message: “In loving memory, Henry G. Molaison, February 26, 1926—December 2, 2008.” Nearby, a framed collage of photos gave a condensed glimpse of his life: Henry as a little boy, seated on a chair with one leg tucked under him, smiling; a dignified sepia-toned portrait from his twenties; Henry as an older man with white hair, sitting in his wheelchair wearing a white shirt and tie; and images of Henry’s family and his younger days.

  The ceremony was small, with only those close to Henry in attendance. I was privileged to deliver Henry’s eulogy, in which I recounted the story of his operation and the groundbreaking studies that followed. I also spoke about the people who made it possible for Henry to make his contributions to science, including Lillian Herrick; her son Mr. M., who had taken over the responsibility of seeing to Henry’s welfare; and the staff at Bickford. “All of these good people lit up his life,” I said. “And he in turn illuminated other people’s lives.” I talked about Henry’s personal qualities—his clever sense of humor, his intelligence, and his signature catch phrases.

  “For many of us, losing him was like losing a family member,” I concluded. “My colleagues and I are honored to have been part of his inner circle. Today, we say goodbye to him with respect and with gratitude for the way in which he changed the world and us. His tragedy became a gift to humanity. Ironically, he will never be forgotten.”

  After the funeral mass, we all made our way next door to the church hall for a reception; a staff member from Bickford and my assistant brought sandwiches and cookies. Others at the service included several Mass General colleagues who had recently taken part in the effort to image and preserve Henry’s brain. For them, it was a chance to pay their respects, drink a little tea or coffee, and decompress after a frantic and sleepless week. Three former lab members who had worked with Henry were there, as were Bickford staff members and fellow patients.

  After the reception, we drove to a cemetery in East Hartford for the burial, and walked across the flat expanse of grass to a large headstone at the site where Henry’s parents were buried. Below their names were his name and date of birth; we could now fill in the date of death. The funeral director had prepared the gravesite, and the urn containing Henry’s ashes was placed on a short, white Grecian column. We stood in a small semicircle around the urn while the church deacon said the words of committal. When he asked that we join him in prayer, we bowed our heads and thought about Henry.

  The day after Henry died, I sent out a brief email sharing the news with other memory researchers. They forwarded the message to others, so the word spread quickly to scientists throughout the United States and Europe. Over the next few weeks, I received heartwarming thoughts from colleagues around the world, offering condolences and messages of praise for Henry. I also entertained requests from the media for interviews and articles about Henry.

  Some colleagues replied with statements about Henry’s contributions to science. A professor in the Psychology Department at Yale University wrote to Brenda Milner and me, “Learning of your work with H.M. was one of the major influences on the direction of my own thinking about cognition and memory very early in my career.” Several faculty members at other universities mentioned that they would include a tribute to Henry in their classes that day, and former lab members shared anecdotes about him. I learned, for instance, that Sarah Steinvorth had sat with him in his room at Bickford and watched a John Wayne movie through to the end, and that Henry had been “on fire” the whole time, repeating, “I know this, I know this,” and talking about his own gun collection. She said he was excited for some time after the movie ended.

  I also learned that a former technical assistant had once played a practical joke on one of my graduate students by taking advantage of Henry’s ability to keep items in his memory for longer periods of time by rehearsing them. She wrote:

  You recall, Henry was always game for a good joke. I told him that the next person coming in to test him was named John, and asked him to act surprised when he entered the room, and say “Oh, hi John,” like he recognized him. We practiced for a few minutes, and then I ran like mad to bring John in for his session with Henry. Henry did an extremely believable double take, and as natural as could be, delivered his line perfectly. The look on John’s face was priceless! Henry and I had a good laugh about it.

  I had a forty-six year bond with Henry. While I did not speak about him in a sentimental way, he had grown to mean something to me. An MIT historian captured my sentiments in an email to me after Henry’s death: “This has to be a grievous loss for you. It is such an unusual relationship that it is hard to articulate its meaning—but surely it is true that you made an enormous difference in his life—as he did in yours.” My interest in Henry, however, had always been primarily intellectual; how else would I explain why I had stood on a chair in the basement of Mass General, ecstatic to see his brain removed expertly from his skull? My role as a scientist had always been perfectly clear to me. Still, I felt compassion for Henry and respected him and his outlook on life. He was more than a research participant. He was a collaborator—a prized partner in our larger quest to understand memory.

  Over the years, as Henry lost his father and mother, and as he aged and his health became more vulnerable, my colleagues and I became the people who knew him and cared about him. The sense of family that we cultivated in the lab extended to Henry. We sent him cards and gifts, celebrated his birthdays, and had his favorite foods on hand when he visited. I looked after his medical care and found a dependable and caring conservator for him. Although Henry could not remember, I take comfort in knowing that in the days he spent working with my colleagues and me, he knew that we were learning from him and that he was special. That knowledge was gratifying for him and gave him a sense of pride.

  Henry’s legacy extends beyond science into the realm of art and theater. In 2009, shortly after his death, Los Angeles artist and filmmaker Kerry Tribe created a 16-mm film installation, H.M. The film explored Henry’s case using actors, interviews with me, images of the apparatuses used in our experiments, and photographs of Henry’s world. During the screening, a single reel of film passed through two adjacent projectors, showing the identical picture on each of two screens with a twenty-second delay, mimicking the duration of Henry’s short-term memory. Tribe’s innovative film was featured in the 2010 Biennial at the Whitney Museum in New York, and Holland Carter of the New York Times called it “extraordinary.” The same year, Marie-Laure Théodule created a seven-page graphic story about H.M., which she published in the summer edition of a French scientific publication, La Recherche. She accurately described his operation and the subsequent research but transformed Henry into a thin, dapper-looking gentleman in a suit, dress shirt, tie, and hat. In 2010, New York–based psychologist and playwright Vanda premiered Patient HM, which dramatized her intuition about what Henry was like as a human being. The next summer, the 2011 Edinburgh Festival featured a play entitled 2401 Objects, referring to the 70-micron slices of Henry’s brain. This production by the Analogue theater company told the touching story of Henry’s preoperative and postoperative life. Scientific American Mind featured a one-page graphic story in July 2012, which accurately conveyed the scientific messages in Henry’s case.

  The Internet is home to a growing community that is fascinated by Henry and his story. When we Google Henry Molaison, more than sixty-two thousand results appear. Henry Molaison is the topic of a Wikizine (an interactive magazine created and edited by users). A blog called Kurzweil Accelerating Intelligence has a discussion of H.M.’s case, and other sites, such as Amusing Planet and Brain On Holiday, devote pages to Henry. The astonishing widespread in
terest in Henry is a fitting testimony to his unforgettable life.

  My work with Henry often focused on the details of measuring behavior and interpreting data, but of course his case raises larger questions for society. How are we to see the life of Henry Gustave Molaison? Was he purely a tragic victim who lost an important part of his humanity to medical experimentation, or was he a hero for furthering our understanding of the brain?

  The more I consider Henry’s case, the more difficult it seems to answer these questions. No neurosurgeon today would perform the same operation that Scoville did on Henry, and indeed Scoville himself warned others against attempting the same procedure after its results became clear. But unlike the more dubious practices of psychosurgery, such as prefrontal lobotomy and bilateral amygdalectomy, Henry’s bilateral medial temporal-lobe resection was intended to alleviate a specific debilitating disease, and it did decrease the frequency of his seizures. Moreover, Henry’s operation was nested in a long, fruitful medical tradition of experimental procedures.1

  Doctors and patients often face tough choices, but neurosurgeons universally agree that a procedure that has a known devastating effect, such as wiping out a patient’s memory, should not be performed. Wilder Penfield touched on this idea in a paper discussing the two cases of amnesia in his own patients, F.C. and P.B. “As a surgeon I take this responsibility very seriously,” he said. “I know that Dr. Scoville does likewise. We must always balance the dangers of disability and of death against hope of helping our patients.” In 1973, twenty years after Henry’s operation, Scoville wrote about psychosurgery in the Journal of Neurosurgery: “If destructive surgery benefits overall function, it is justified; if overall function is made worse by operation, it is not justified.”2

  Was becoming amnesic an acceptable price to pay for seizure control? Most would agree that the answer is decidedly no. Yet it is not clear that Henry would have lived to the age of eighty-two had his seizures continued as they had prior to his surgery. The seizures themselves could have produced devastating outcomes: in the extreme, Henry could have died as the result of an injury sustained during a seizure. Moreover, drug-refractory epilepsy patients often have abnormalities of the heart and blood vessels, which sometimes result in sudden death, and evidence also suggests that repeated seizure activity causes damage to neurons. Further, Henry’s seizures could have compromised his breathing and other vital functions, possibly resulting in death. Or he might have been one of the unfortunate patients who goes into status epilepticus—thirty minutes or more of continuous seizure activity. This life-threatening occurrence is considered a medical emergency, and despite aggressive treatments, patients sometimes die during status epilepticus due to heart failure or other medical complications. In this sense, Henry’s surgery had significant benefits. So, although his quality of life was severely compromised by his amnesia, he probably lived a much longer life than he would have had his seizures continued at the preoperative frequency. Scoville arguably saved Henry’s life, even if he took his memory.3

  With the benefit of hindsight, no one would perform Henry’s operation today, but was Scoville justified in performing it in the first place, when its outcome was unknown? In many cases, medicine advances through the willingness of patients and doctors to take risks. Those gambles may be relatively minor, as in agreeing to participate in a clinical trial of a drug that has been thoroughly tested for safety in animals and humans. Other times, the patient’s decision requires a much more dramatic leap of faith. Operations we now consider routine—organ transplants, artificial heart implants, coronary bypasses—all depended initially on volunteers to take part in experimental procedures.

  Risk is inherent in every kind of surgery, and risks intensify when complex and fragile organs such as the brain are concerned. Stricter medical ethics codes, our increasingly litigious society, and the rise of bioethics as a formal discipline have made the public and the medical community aware of the need to scrutinize the justification for daring procedures. We now have much better knowledge of individual brain structures and their roles, and a more realistic sense of what brain surgery can and cannot do in terms of alleviating psychiatric or neurological disorders. Still, experimental procedures continue to raise ethical questions. While rules for new treatments and devices are far more stringent now than at the time of Henry’s operation, highly experimental surgeries are not as formally regulated, and surgeons sometimes make decisions for an individual patient, without the benefit of data from large clinical trials or animal studies.

  Countless patients, such as Henry, have undergone procedures with the knowledge that the outcome was uncertain. Sometimes these people ended up benefiting society in ways that could not have been anticipated. Henry’s chief motivation for participating in research after his operation was to help other people—and he did. For instance, after his death, I received a note from a woman who had temporal lobe epilepsy and had read about H.M. She had weighed the possibility of having her left hippocampus and amygdala removed to alleviate her seizures. Hundreds of patients with intractable epilepsy have benefited from surgery in which one temporal lobe was partially removed. Henry showed us that removing the hippocampus on both sides of the brain would cause irreparable loss of memory functions. The amnesic patients whose cases I described, F.C. and P.B., had a similar devastating outcome when their left hippocampus was removed surgically and their right hippocampus was already damaged. In order to prevent further tragedies of this sort, many candidates for epilepsy surgery now undergo a test that temporarily inactivates one side of their brain, allowing physicians to examine the integrity of language and memory separately on each side. This procedure—formerly called the Wada test and now called the eSAM (etomidate speech and memory) test—prevents surgical misfortunes. For example, if the patient makes errors on a memory test with the left side inactivated, the surgeon would not remove the right hippocampus because that would result in a bilateral hippocampal lesion.

  “As I sit in my fourteenth floor office,” the woman wrote to me in 2008, “with my window facing the Connecticut River and Hartford Hospital, where Mr. Molaison had his surgery the year I was born, I am saddened by his death and grateful for the knowledge he provided. Because of him, my neurologists knew to do the Wada test to ensure that the hippocampus in my right temporal lobe was functioning prior to removing the other.” She had a left temporal lobectomy in 1983 and remains seizure-free today.

  Henry’s case did not just help other patients; it also ignited the careers of countless neuroscientists. I interviewed a distinguished neurologist and geneticist at Children’s Hospital Boston concerning the future trajectory of memory research. At the end of the interview, he was bursting to tell me how Henry influenced his life’s work. “Like so many other neuroscientists, a big reason I’m in neuroscience is because of H.M.,” he said. “I went to a small liberal arts college, Bucknell University, and I had the tremendous good fortune that Brenda Milner came and gave a seminar while I was an undergraduate. I was taking physiological psychology at the time. And so she actually came and lectured in our physio-psych class. It’s never left me. That’s a big reason why I’m interested in memory disorders and cognitive disorders—trying to understand how we can get at the mechanisms of memory.”

  Henry participated in a period of incredible change and advancement in our understanding of the brain, although he was unable to remember any of it. When he first became a subject of scientific inquiry, brain imaging was nearly nonexistent, and we collected data by hand with paper and pencil. During the 1980s, our cognitive testing became largely computerized, and in the 1990s MRI scans allowed us to visualize the structures and functions in his brain. By the time Henry died, we could study his brain with even greater precision. When our research with Henry began, we were all housed in psychology departments, and neuroscience was not even a full-fledged discipline. By November 2010, nueroscience had grown into a formidable discipline, and more than 30,000 neuroscience from all over the world atte
nded the fortieth annual meeting of the Society for Neuroscience in San Diego. I had been invited to deliver a talk about Henry’s contributions to the science of memory—a fitting way to celebrate his life.

  The array of technologies now available to neuroscientists is staggering. Researchers can probe the molecular interactions within and between neurons, see the activity of large-scale networks in the living brain, scan the genome to find the genetic basis of neurological disease, and build complex computer models of brain structure and function. With all the tools we now have to study cells and gather large sets of data, we should remember how much can be learned by applying those tools to a single individual. By carefully examining one patient over time, we can fill in the gaps in our knowledge about how individual brains function and change throughout life, in health and disease. Our work with Henry provides an example.

  Henry’s case was revolutionary because it told the world that memory formation could be contained in a specific part of the brain. Before his operation, physicians and scientists acknowledged that the brain was the seat of conscious memory, but had no conclusive proof that declarative memory was localized to a circumscribed area. Henry provided us with causal proof that a discrete brain region deep in the temporal lobes is absolutely critical for converting short-term memories into enduring ones. Scoville’s operation caused Henry to lose this capacity. Based on decades of research with Henry and numerous patients who volunteered their time and effort in our laboratory and many others around the world, we now know much more: short-term and long-term memory are separate processes that depend on different brain circuits; remembering unique events (episodic memory) and remembering facts (semantic memory) are both impaired in anterograde amnesia; learning with awareness (declarative memory) is impaired in amnesia, whereas learning without awareness (nondeclarative memory) typically is not. We also understand that a healthy hippocampus is essential for vividly recounting the details of a wedding (recollection), but that it is not essential for simply recognizing a face, without identifying it or placing it in a context (familiarity). Henry further showed us that the ability to recall and recognize information stored before the onset of amnesia differs depending on whether it is episodic or semantic information: most details of unique events are lost (episodic, autobiographical memory), but general knowledge of the world is preserved (semantic memory). Henry’s case also underscored the value of donating one’s brain for further study after death—a vital way for researchers to test their hypotheses and speculations, based on living patients, about the brain substrates that are responsible for specific learning and memory processes.

 

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