An unrelentingly hectic flow of events—deadlines, hurricanes, and health scares, to mention just a few—has kept me from reporting on recent reading and viewing experiences. So I actually read these three books several months ago, and am hoping that I took adequately good notes to at least somewhat encapsulate my impressions of Asleep: The Forgotten Epidemic That Remains One of Medicine’s Greatest Mysteries (Molly Caldwell Crosby, 2010), The Mind’s Eye (Oliver Sacks, 2010), and Head Cases: Stories of Brain Injury and Its Aftermath (Michael Paul Mason, 2008). These were interesting separately and I have thought a joint discussion of them should also be interesting, as they raised but did not always precisely meet my expectations. My ambitions and analyses were keener six months ago, so achievement of that goal remains to be seen.
Asleep: The Forgotten Epidemic That Remains One of Medicine’s Greatest Mysteries
I was very excited to stumble on Crosby’s book on the sleeping sickness epidemic, some of whose victims Oliver Sacks worked with and immortalized in Awakenings. I found it at City Lights last year and pounced on it immediately, thinking it would be a comprehensive medical history along the lines of the best I’ve read in this genre, John M. Barry’s The Great Influenza. And it had a lot to lead me to that expectation: a glowing endorsement on the front cover from Oliver Sacks himself, a great title (“forgotten” and “mysteries” playing off each other tantalizingly in the subtitle), and seven succinct divisions, the title of each of which was prefaced by “Case History.” I settled in with a sigh of pleasure, but was soon somewhat disappointed. The case studies focused far more on the doctors and the politics surrounding the quest for the cure than on the actual disease. Moreover, the author throws in a broad range of irrelevant detail in an attempt at scene setting; these tend to open each new chapter. It is the same flaw exhibited by TV historians, so eager to draw us into their topic that they resort to cheesy reenactment, fearing that we cannot travel back in time and find the humanity in yellowing photographs and old diary entries alone, that we of the visual era can only relate to colorized verisimilitude. Crosby, who is a gifted and economical writer, thus bogs down her book with sometimes laughably far-flung references and descriptions.
Which was not what I was interested in at all. I wanted details of this horrific sleepy sickness. How were the patients kept alive, sustained, through this disease that robbed them of all sensibility, that suspended them in a half life for days, weeks, months, years? How did they eat, eliminate? How were they hydrated? How did it feel?
Sleepy sickness is a macabre and fascinating disease, as this film from the Wellness Trust Film Project makes clear:
To her credit, Crosby does encephalitis lethargica justice, describing its onset and symptoms clearly and compellingly:
For his parents, the transition was terrifying. Philip would not wake, even when shouted at, even when shaken. When he did open his eyes, they stared, frozen, at something no one else could see. The day that his illness finally broke, and Philip began to recover, the whole family felt enormous relief. But the Philip who awakened from that deep sleep was not the same.
Or this, which could have come from a horror story:
The attendant hurried to the floor desk to find the nurse in charge of that ward. The nurse rushed into Rosie’s hospital room and found her sitting calmly in bed, holding her right eye in her hand.
But the overriding problem is that Crosby does not stay with the victims, or even with the victims and their caregivers and physicians, but instead crowds her canvas well beyond capacity and comprehension. So we go from the account of Rosie’s terrifying self-mutilation, closed with this observation:
Still, no record of what ultimately happened to Rosie exists… Like so many others, the end of her case history was either forgotten or destroyed. For many patients like Rosie, the insanity caused by epidemic encephalitis was overshadowed by the physical disabilities. Over time, the inevitable Parkinsonism set in. They became living statues confined to wheelchairs or beds. If there was still rage within them, it was buried deep beneath the stony surface.
To this at the beginning of the next chapter:
The Olympic sailed across a gunmetal gray sea rife with storms, finally arriving in the glassy harbor in autumn of 1929 with a clear view of New York’s skyline. Rather than a rocky island weighed down by buildings, Manhattan looked more like a city carved from a mountain range, molded and sculpted into geometrical shapes. If most cities adapt to their terrain, it was just the reverse in New York. And at night, from a distance, the building shapes dimmed, leaving only rectangular window light and a skyline studded with honey amber.
This is followed by another paragraph in which she quotes F. Scott Fitzgerald, Ezra Pound, Ayn Rand, and Frank Lloyd Wright on their impressions of New York’s view.
Supremely unnecessary, reeking of padding at worst and—at best—of the desire to show off the background reading done for this epidemic of the 1920s. In any event, and on balance, it was this overwriting that spoiled the book for me. That is not to say that it is uninteresting, poorly researched, or badly done. Just that the details it contained were not the ones I had come for.
It is worth noting the bottom line about the epidemic. Apparently, sleepy sickness has appeared throughout history, but never in the epidemic proportions it did on the coattails of the Spanish flu. Its origins and causes have never been determined, although it is thought to be an immune response. Crosby’s last chapter succinctly discusses current thinking and research on the disease in a brisk and accessible fashion. This is what she does best; her editors would have served her well by discouraging the plays for human interest and sticking with concise surveys of scientific facts.
The Mind’s Eye
If the flaw of Molly Caldwell Crosby’s book was its tendency to draw in wide irrelevancies, the problem I had with Oliver Sacks’s book was its introversion. Where Crosby played up the external, Sacks’s focus was on the interior. I was surprised, in short, at how large a role Sacks and his various medical issues played in the book.
I liked the book overall. He is a wonderful, empathetic, utterly nonjudgmental, caring man, and his case studies are eloquent and alarming and human. I must confess, however, that I remember very little of the specifics of these cases. I do remember a bit about face blindness—the idea that some people simply cannot recognize faces—and there is a very interesting discussion of how vision works in the brain. But I was disappointed overall: there were fewer case studies than usual in a Sacks book, and much of the end of the book was taken up with discussions of his own what he terms “visual challenges.”
I took no notes and thus have nothing to fall back on here. Sacks is a graceful, gracious writer, and it is always a pleasure to be introduced to those very odd and often so charming people he meets and works with. I wish there had been more such in this book.
Head Cases: Stories of Brain Injury and Its Aftermath
The tone and perspective of Michael Paul Mason are far removed from those of either Crosby or Sacks. He, like Sacks, works with damaged, injured people. But he is a case worker, one of the “tens of dozens” who provide input used to parcel out limited care to a too-large needy population. And so his book has none of the Olympian calmness available to historian Crosby or philosophic physician Sacks. Instead, this book is raw and ragged; its author heartsick and frustrated. This is no set of clinical case studies; this is a polemic, an eye-opening plea for more resources, more understanding, and more care for the victims of brain injury.
I was at first put off by Mason’s tone, which is a little blunt, sometimes clumsy, a little self-indulgent or even obtuse in a couple of places. But then, as I began to understand what he was saying, I found the tone absolutely right. Here, he introduces his topic:
A tap on the head, and anything can go wrong. Anything usually does go wrong. You may not remember how to swallow. Or you may look at food and perspire instead of salivate and salivate when you hear your favorite song. You may not know your name, or you may think you’re someone different every hour. Everyone you know and will ever know could become a stranger, including the face in the mirror. When you tell someone you’re sad, you may shriek; your entire vocabulary may consist only of groans or hiccups. A brain injury can shatter your notions of the future, splinter your past, and send your sense of time whirling in any number of directions. And that’s just the beginning.
The sequence of events goes something like this: the brain gets damaged, and two months later, the million-dollar insurance policy is depleted and the patient is shuffled out the door with a shrug of shoulders. A course of treatment that should have lasted years is cut short before it even starts…Meanwhile, the TBI survivor gets bumped from nursing home to psychiatric ward to emergency room to homeless shelter to group home and elsewhere. They subsist in a medical purgatory.
Mason then proceeds to present heart-rending stories of profound and often bizarre loss when accidents befell a set of ordinary people and rendered them extraordinarily broken, battered, and then rebuilt. He tells of people lucky enough to receive treatment, and those for whom no treatment exists or can be paid for or has run out. I liked how he described one survivor of a horrific brain injury, who has emerged from a car accident that claimed the life of her daughter without any episodic memory: “Each day, she engages in intensive therapies that, over time, have helped her reconcile her impairments with her wishes.”
His chapter on brain injury care in the battlefield, Iraq to be specific, is particularly fascinating—and frightening. He notes, “A hundred years ago, a horse’s kick to the head would have done you in. In Iraq, you can take a golf ball–size missile through the skull and survive… The global war on terror has already yielded more than ten thousand survivable traumatic brain injuries to American troops, and there are no indications that the rate will slow.” Mason then goes on to detail the unbelievable techniques that are being used and developed on the ground in the war zones, and contrasts it with the Civil War–era medicine that exists in Baghdad: “Iraqi neurotrauma surgery amounts to peering directly into the head and pulling out whatever doesn’t appear to belong.”
Mason ends his collection of case studies—some of which end well, some not so well, all of them about compromise—with a list of resources about brain injury. The scarcity of these resources is chilling.
The combined message of the three books is that the mind and the body and the brain are very peculiar, very particular, instruments, whose functioning we all too often take far too for granted. When something goes wrong and the systems are altered, life is very often not worth living, so constrained and contorted does existence become. Sobering realizations.