In 1989, Pat’s husband died suddenly of a heart attack. Pat herself had had open-heart surgery for a damaged valve the year before, and had been put on anticoagulants. She had taken this in stride—but with her husband’s death, as one of her daughters said, “She seemed stunned, became very depressed, lost weight, fell in the subway, had accidents with the car, and would show up, as if lost, on our doorstep in Manhattan.” Pat had always been somewhat volatile in mood (“She would be depressed for a few days and take to her bed, then leap up in an opposite frame of mind and rush into the city, with a thousand engagements of one sort and another”), but now a fixed melancholy descended on her.
When, in January of 1991, she did not answer her phone for two days, her daughters became alarmed and called a neighbor, who, with the police, broke into Pat’s house to find her lying in bed unconscious. She had been in a coma for at least twenty hours, the daughters were told, and had suffered a massive cerebral hemorrhage. There was a huge clot of blood in the left half of her brain, her dominant hemisphere, and it was thought that she would not survive.
After a week in the hospital with no improvement, Pat underwent surgery as a last-ditch measure. The results of this, her daughters were told, could not be predicted.
Indeed, it seemed at first, after the clot was removed, that the situation was dire. Pat would “stare … without seeming to see,” according to one of her daughters. “Sometimes her eyes would follow me, or seem to. We didn’t know what was going on, whether she was there.” Neurologists sometimes speak of “chronic vegetative states,” zombie-like conditions in which certain primitive reflexes are preserved but no coherent consciousness or self. Such states can be cruelly tantalizing, for there is often the feeling that the person is about to come to—but the states may last for months or even indefinitely. In Pat’s case, though, it lasted for two weeks and then one day, as her daughter Lari recalled, “I had a Diet Coke in my hand—she wanted it. I saw her eye it. I asked, ‘Do you want a sip?’ She nodded. Everything changed at that moment.”
Pat was conscious now, recognized her daughters, was aware of her condition and her surroundings. She had her appetites, her desires, her personality, but she was paralyzed on the right side, and, more gravely, she could no longer express her thoughts and feelings in words; she could only eye and mime, point or gesture. Her understanding of speech, too, was much impaired. She was, in short, aphasic.
“Aphasia” means, etymologically, a loss of speech, yet it is not speech as such which is lost but language itself—its expression or its comprehension, in whole or in part. (Thus, congenitally deaf people who use sign language may acquire aphasia following a brain injury or stroke and be unable to sign or understand sign language—a sign aphasia in every way analogous to the aphasia of speaking people.)
There are many different forms of aphasia, depending on which parts of the brain are involved, and a broad distinction is usually made between expressive aphasias and receptive aphasias—if both are present, this is said to be a “global” aphasia.
Aphasia is not uncommon; it has been estimated that one person in three hundred may have a lasting aphasia from brain damage, whether as the consequence of a stroke, a head injury, a tumor, or a degenerative brain disease. Many people, however, have a complete or partial recovery from aphasia. (There are also transient forms of aphasia, lasting only a few minutes, which may occur during a migraine or a seizure.)
In its mildest forms, expressive aphasia is characterized by a difficulty finding words or a tendency to use the wrong words, without compromise of the overall structure of sentences. Nouns, including proper names, tend to be especially affected. In more severe forms of expressive aphasia, a person is unable to generate full, grammatically complete sentences and is reduced to brief, impoverished, “telegraphic” utterances; if the aphasia is very severe, the person is all but mute, though capable of occasional ejaculations (such as “Damn!” or “Fine!”). Sometimes a patient may perseverate on a single word or phrase which is uttered in every circumstance, to their evident frustration. I had one patient who, after her stroke, could say nothing but “Thank you, Mama” and another, an Italian woman, who could utter only “Tutta la verità, tutta la verità.”
Hughlings Jackson, a pioneer explorer of aphasia in the 1860s and ’70s, considered that such patients lacked “propositional” speech, and that they had lost internal speech as well, so they could not speak or “propositionize,” even to themselves. He felt therefore that the power of abstract thought was lost in aphasia, and in this sense, he compared aphasics to dogs.
In his excellent book Injured Brains of Medical Minds, Narinder Kapur cites many autobiographical accounts of aphasia. One of these is from Scott Moss, a psychologist who had a stroke at the age of forty-three, became aphasic, and later described his experiences, which were very much in accord with Hughlings Jackson’s notions about the loss of inner speech and concepts:
When I awoke the next morning in the hospital, I was totally (globally) aphasic. I could understand vaguely what others said to me if it was spoken slowly and represented a very concrete form of action.… I had lost completely the ability to talk, to read and to write. I even lost for the first two months the ability to use words internally, that is, in my thinking.… I had also lost the ability to dream. So, for a matter of eight to nine weeks, I lived in a total vacuum of self-produced concepts.… I could deal only with the immediate present.… The part of myself that was missing was [the] intellectual aspect—the sine qua non of my personality—those essential elements most important to being a unique individual.… For a long period of time I looked upon myself as only half a man.
Moss, who had both expressive and receptive aphasia, also lost the ability to read. For someone who has only an expressive aphasia, it may still be possible to read and to write (provided the writing hand is not paralyzed by the stroke).1
Another account was that of Jacques Lordat, an eminent early-nineteenth-century French physiologist who provided an extraordinary description of his own aphasia after a stroke, sixty-odd years before Hughlings Jackson’s studies. His experiences were quite different from Moss’s:
Within twenty-four hours all but a few words eluded my grasp. Those that did remain proved to be nearly useless, for I could no longer recall the way in which they had to be coordinated for the communication of ideas.… I was no longer able to grasp the ideas of others, for the very amnesia that prevented me from speaking made me incapable of understanding the sounds I heard quickly enough to grasp their meaning.… Inwardly, I felt the same as ever. This mental isolation which I mention, my sadness, my impediment and the appearance of stupidity which it gave rise to, led many to believe that my intellectual faculties were weakened.… I used to discuss within myself my life work and the studies I loved. Thinking caused me no difficulty whatever.… My memory for facts, principles, dogmas, abstract ideas, was the same as when I enjoyed good health.… I had to realize that the inner workings of the mind could dispense with words.
Thus in some patients, even if they are totally unable to speak or understand speech, there may be perfect preservation of intellectual powers—the power to think logically and systematically, to plan, to recollect, to anticipate, to conjecture.2
Nevertheless, a feeling remains in the popular mind—and all too often in the medical mind, too—that aphasia is a sort of ultimate disaster which, in effect, ends a person’s inner life as well as their outer life. Something along these lines was said to Pat’s daughters, Dana and Lari. A little improvement, they were told, might occur, but Pat would need to be put away for the rest of her life; there would be no parties, no conversation, no art galleries anymore—all that had constituted the very essence of Pat’s life would be gone, and she would lead the narrow life of a patient, an inmate, in an institution.
Scarcely able to initiate conversation or contact with others, patients with aphasia face special dangers in chronic hospitals or nursing homes. They may have therapy of every so
rt, but a vital social dimension of their lives is missing, and they frequently feel intensely isolated and cut off. Yet there are many activities—card games, shopping trips, movies or theater, dancing or sports—that do not require language, and these can be used to draw or inveigle aphasic patients into a world of familiar activities and human contact. The dull term “social rehabilitation” is sometimes used here, but really the patient (as Dickens might put it) is being “recalled to life.”
Pat’s daughters were determined to do everything they could to bring their mother back into the world, to the fullest possible life her limitations allowed. “We hired a nurse who retaught my mother how to feed herself, how to be,” Lari said. “Mother would get angry, sometimes strike her, but she, the nurse, would never give up. Dana and I never left her side. We would take her out, wheel her to my apartment.… We would take her out to restaurants, or bring food in, have her hair done, her nails manicured.… We never stopped.”
Pat was moved from the acute care hospital where she had had surgery to a rehabilitation facility. After six months, she was finally moved to Beth Abraham Hospital, in the Bronx, where I first met her.
When Beth Abraham Hospital was opened, in 1919, it was called the Beth Abraham Home for Incurables, a discouraging name that was changed only in the 1960s. Originally accommodating some of the first victims of the encephalitis lethargica epidemic (some of whom were still living there more than forty years later, when I arrived), Beth Abraham expanded over the years to become a five-hundred-bed hospital with active rehabilitation programs aimed at helping patients with all sorts of chronic conditions: parkinsonism, dementias, speech problems, multiple sclerosis, strokes (and, increasingly, spinal or brain damage from bullet wounds or car accidents).
Visitors to hospitals for the chronically ill are often horrified at the sight of hundreds of “incurable” patients, many of them paralyzed, blind, or speechless. One’s first thought is often: Is life worth living in circumstances like these? What sort of a life can these people have? One wonders, nervously, how one would react to the prospect of being disabled and entering such a home oneself.
Then one may start to see the other side. Even if no cure, or only limited improvement, is possible for most of these patients, many of them can nonetheless be helped to reconstruct their lives, to develop other ways of doing things, capitalizing on their strengths, finding compensations and accommodations of every sort. (This, of course, depends upon the degree and type of neurological damage, and upon the inner and outer resources of the individual patient.)
If the first sight of a chronic hospital can be hard for visitors, it can be terrifying for a new inmate; many react with horror mixed with sadness, bitterness, or rage. (Sometimes this even results in a full-blown “admission psychosis.”) When I first met Pat, shortly after her admission to Beth Abraham in October of 1991, I found her angry, tormented, and frustrated. She did not yet know the staff or the layout of the place, and she felt that a rigid, institutional order was being imposed on her. She could communicate through gestures—these were passionate, if not always understandable—but she still had no coherent speech (though occasionally, the staff said, she would exclaim “Hell!” or “Go away!” when she was angry). While she seemed to understand a good deal of what people said to her, it became clear, on examination, that she was responding not so much to words as to the tone of voice, facial expression, and gestures.
When I tested her in the clinic, Pat could not respond to “Touch your nose,” either in speech or in writing. She could count (“one, two, three, four, five …”) as a sequence, but could not say individual numbers or count backward. The right side of her body remained completely paralyzed. Her neurological situation, I noted in my report, was “a bad one. I fear there may not be too much recovery of language functions, but intensive speech therapy, as well as physical therapy and occupational therapy, must certainly be tried.”
Pat yearned to speak, but was continually frustrated when, after huge efforts to get a word out, it would be the wrong word, or unintelligible. She would try to correct it, but often would become more unintelligible with every attempt to make herself understood. It started to dawn on her, I think, that her power of speech might never come back, and increasingly she retreated into silence. This inability to communicate was, for her, as for many patients with aphasia, far worse than the paralysis of half her body. I would sometimes see her, in this first year after her stroke, sitting alone in the corridor or in the patients’ dayroom, bereft of speech, surrounded by a sort of penumbra of silence, with a stricken and desolate look on her face.
But a year later, I found Pat much improved. She had developed a knack for understanding other people by their gestures and expressions as much as their words. She could indicate her own thoughts and feelings not by speech but by eloquent gesture and mime. She indicated, for example, fluttering a couple of tickets, that she would go to the movies if, and only if, a friend of hers could go, too. Pat had become less angry, more sociable, and very aware of all that was going on around her.
This represented an enormous social improvement—an improvement in her ability to communicate—but I was not sure how much it rested on actual neurological improvement. Friends and relatives of aphasic patients often think that there is more neurological recovery than there actually is, because many such patients can develop a remarkable compensatory heightening of other, nonlinguistic powers and skills, especially the ability to read others’ intentions and meanings from their facial expressions, vocal inflections, and tone of voice, as well as all the gestures, postures, and minute movements that normally accompany speech.
Such compensation may give surprising powers to the aphasic—in particular, an enhanced ability to see through histrionic artifice, equivocation, or lying. I described this in 1985,3 when I observed a group of aphasic patients watching a presidential speech on television, and in 2000 Nancy Etcoff and her colleagues at Massachusetts General Hospital published a study in Nature which showed that people with aphasia were in fact “significantly better at detecting lies about emotion than people with no language impairment.” Such skills, they observed, apparently took time to develop, for they were not evident in a patient who had been aphasic for only a few months. This seemed to be the case with Pat, who had initially been far from expert in picking up others’ emotions and intentions but over the years had become preternaturally skillful at it. If aphasic people come to excel in understanding nonverbal communication, they can also become expert in conveying their own thoughts in the same way—and Pat was now starting to move towards a conscious and voluntary (and often inventive) representation of her thoughts and intentions by mime.
Yet while gesture and mime, lacking the grammar and syntax of real language, are usually spared in aphasia, they are not enough; they have only a limited ability to convey complex meanings and propositions (unlike a true sign language, such as deaf people use). These limitations often infuriated Pat, but a crucial change came when her speech pathologist, Jeannette Wilkens, discovered that though Pat could not read a sentence, she could recognize individual words (and that, indeed, her vocabulary was quite extensive). Jeannette had found this with other aphasic patients as they started to recover, and she had devised a sort of lexicon for them, a book of words arranged in categories of objects, people, and events, as well as moods and emotions.
Such a lexicon often worked, Jeannette found, when patients were closeted in one-on-one sessions with her, but many aphasic patients had difficulty reaching out to others—perhaps they were too shy, too depressed, or too disabled from other medical conditions to initiate contact with other people.4 None of this was the case with Pat, who had been outgoing and social all her life. She always carried the book on her lap or at the side of her wheelchair, so she could leaf through it rapidly with her left hand and find the words she needed. She would boldly approach someone, open her book to the right page, thrust it at them, and point to the subject she wanted to talk about.
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Pat’s life expanded in all sorts of ways with her “bible,” as her daughters called it. Soon she was able to guide a conversation in any direction she wanted, a conversation that was on her part accomplished solely by gesture and mime—and this had to be done primarily with her left arm, for her right side was still completely paralyzed. Nevertheless, the combination of gesture and mime with the words in her book allowed her a remarkably full and exact expression of her needs and thoughts.
Inside the hospital, she became a central social figure, despite being unable to communicate in the usual way. Her room became a chat room, with other patients often dropping by. Pat would talk to her daughters on the phone, they said, “a hundred times a day,” though the conversations were all passive on her part, awaiting simple questions to which she could answer “yes” (she communicated “yes” by kisses), “no,” or “fine,” or by noises of approbation, amusement, or disapproval.
By 1996, five years after her stroke, Pat’s receptive aphasia had lessened; she was able to understand a little speech, though still unable to express herself in speech. She had certain fixed phrases, like “You’re welcome!” or “Fine!,” but could not name familiar objects or utter a sentence. She started to paint once again, using her left hand, and she was a terror at dominoes—her nonverbal representational systems were unimpaired. (It has long been understood that aphasia need not affect musical ability, visual imagery, or mechanical aptitude, and Nicolai Klessinger and his colleagues at the University of Sheffield have shown that numerical reasoning and mathematical syntax can be entirely intact even in patients who are unable to understand or produce grammatical language.)