*all definitions are taken from Wikipedia
· It is important to detail the person’s experience with the sickness as well. This is essential to understanding neurology and psychology.
· There is a sort of myth, fable, magic—“romantic science”.
· Epigraphs: “To talk of diseases is a sort of ‘Arabian Nights’ entertainment.” (William Osler); “The physician is concerned [unlike the naturalist]…with a single organism, the human subject, striving to preserve its identity in adverse circumstances.” (Ivy McKenzie)
Part One: Losses
Ø Aphonia: the inability to produce voice; primary cause is bilateral disruption of the recurrent laryngeal nerve, which supplies nearly all the muscles in the larynx
Ø Aphemia: aphasia; disturbance of the comprehension and formulation of language caused by dysfunction in specific brain regions; ranges from having difficulty remembering words to losing the ability to speak, read, or write (also affects visual language such as sign language); usually linked to brain damage, most commonly by stroke; brain damage linked to aphasia can also cause further brain diseases such as cancer, epilepsy, and Alzheimer’s
Ø Aphasia: look above
Ø Alexia: acquired dyslexia; occurs when damage to the brain causes a patient to lose the ability to read
Ø Apraxia: loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements; disorder of motor planning; caused by damage to specific areas of the cerebrum
Ø Agnosia: loss of ability to recognize objects, persons, sounds, shapes, or smells while the specific sense is not defective nor is there any significant memory loss; usually associated with brain injury or neurological illness, particularly after damage to the occipitotemporal border, which is part of the ventral stream
Ø Ataxia: lack of voluntary coordination of muscle movements; implies dysfunction of the parts of the nervous system that coordinate movement, such as the cerebellum
Ø Parkinson’s: degenerative disorder of the central nervous system; motor symptoms result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown; obvious symptoms are movement-related—shaking, rigidity, slowness of movement, and difficulty with walking and gait; cognitive and behavioural problems may arise later, with dementia commonly occurring in the advanced stages of the disease; more common in the elderly, with most cases occurring after the age of 50
Ø Prosopagnosia: face blindness; disorder of face perception where the ability to recognize faces is impaired; caused by acute brain damage but a congenital form of the disorder also exists (2.5% of population); specific brain area usually associated with it is the fusiform gyrus
· “deficit”-an impairment/incapacity of neurological function: loss of speech, language, memory, vision, identity, etc.
· There has been a wide literature on the left side of the brain, but not the right side.
· It sometimes happens that those with right-side brain problems don’t even know they have problems and it’s difficult for others to understand how they feel.
· “A disease is never a mere loss or excess—there is always a reaction, on the part of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity.” The patient is not only his “problem”, he is also his reaction, his history, and his identity, the way he views his “problem” as. There are many with “problems” who don’t believe are issues—trans* people, deaf people, those who are blind, people with mental disorders, disabled people, etc. For many, this is simply another form of identity and it strengthens them. In my opinion, if they don’t believe it to be an issue (for the most part), then it really shouldn’t be.
The Man Who Mistook His Wife for a Hat (visual agnosia—cannot recognize things if they are not abstract/mathematical)
· Dr. P is a gifted professor of music but he mistakes people for objects and has issues with recognizing people and objects except by noting specific features. He cannot recognize the majority of his family or regular objects visually—only by touch or smell or hearing (or recognizable movement). He has a severe tumour probably on the right side of the cerebrum that does not allow him to recognize physical objects, but only abstract ones (example, the cubes and shapes). He sings while he does everything in order to do it. He also does not describe things on the right side. He does not seem to realize that this may be a problem. He is quite happy with everything.
· “Who was more tragic, or who was more damned—the man who knew it, or the man who did not?” This raises an important question—if someone is okay with the way they are, and they’re not really hurting anyone, should they be “fixed”? Sacks says no—instead of telling Dr. P what’s wrong, he tells him that he is a wonderful musician and to keep on doing that for his entire life.
· Dr. P’s art went from realistic to Picasso-like, because of his decreasing awareness of physical reality. Is this good or bad? Possibly, in aesthetic terms, it’s a positive change in aesthetic growth for the artist. And as a musician, D. P never lost his ability to teach, play, or sing. Is Sacks’ behaviour toward Dr. P kind of a betrayal, a not-telling-the-truth-to-save-him-the-pain kind of thing? I think maybe he should have told him but then said what he did. The line is sometimes blurred for doctors and patients when there is something ‘abnormal” with the patient, but there is no grievous issue with it.
· Judgment and identity are not focused on in neurology though they’re the most important faculties of animals and especially humans.
· Our mental processes are not just mathematical and “rational” (abstract, not just classifying and categorizing), they also constitute emotion and “irrationality” as well, which are equally important.
· Dr. P’s visual perception was impaired, but also his visual imagination and memory.
The Lost Mariner (loss of short term memory and inability to comprehend time past 1945)
· Jimmie G is 50 years old but believes he’s 20, right after World War II. He remembers his childhood and adolescence vividly but cannot remember or understand anything past 1945. When faced with facts past World War II, he is bewildered and confused, but quickly forgets within the minute. He cannot perform tasks that last a long time, and his recognition of objects, places, and people past 1945 fade within the minuteà similar to “Memento”.
· This is called Korsakov’s syndrome and is caused by neuron destruction produced by alcohol. It can also be caused by cerebral tumours. Jimmie’s case was probably due to massive alcohol consumption.
· “A man does not consist of memory alone. He has feeling, will, sensibilities, moral being—matters of which neuropsychology cannot speak. And it is here, beyond the realm of an impersonal psychology, that you may find ways to touch him, and change him.” How much does memory make a person and keep his identity? If you only have memory until a certain point or if you increasingly forget (aging), do you become less of a person? Not remembering and not realizing it (in the case of Jimmie) is not bad for the person, but for others, it’s a tragedy to see him like that. Again, a question is, if you don’t know or you don’t think you have an issue, how do you treat it, or do you treat it at all? Back to the question of identity…we are very much shaped by our experiences, our past, what we remember of ourselves and others. Without this knowledge and memory, we lose the ability to move forward in a large manner. There is a lack of purpose, there is only being, a more or less stationary individual. You can still experience joy and sadness and move forward, but it is slow and it is different. It is literally only living in the moment…and this is something that I think is very terrifying to many, including myself. However, if you don’t know you’re missing a part of your life, they may not be so much of an issue.
· “How do you feel about life?” “I can’t say that I feel anything at all.” “You feel alive though?” “Feel alive? Not really. I haven’t felt alive for a very long time.”
· However, Jimmie can be held and can enjoy life and be fulfilled by prayer and by being in church. He found himself and found continuity through spirituality. He found his “soul”, his identity here. Similarly, he found peace and meaning and fulfillment in gardening (rather than puzzles and typing, which were trivial and superficial and could not hold him for very long, once the task was done, he would fall apart). “If he was held in emotional and spiritual attention—in the contemplation of nature or art, in listening to music, in taking part in the Mass in chapel…there would be in him a pensiveness and peace.”
· “I had wondered…if he was not condemned to…a meaningless fluttering on the surface of life…” Empirical science said his disease could not be transcended, “but empiricism takes no account of the soul, no account of what constitutes and determines personal being…however great the organic damage…there remains the undiminished possibility of reintegration by art, by communion, by touching the human spirit: and this can be preserved in what seems at first a hopeless state of neurological devastation.”
· Sometimes, pure science cannot “fix” things, but other things can make them better. There are other medicines than just those prescribed by doctors. The mind is so intertwined with the body that they can affect each other and sometimes, pills cannot make things better, but alternative healing can.
· There are cases where patients don’t realize they have lost a function—not knowing you are blind or in Dr. P’s case, not knowing one has an issue with recognizing faces. Some Korsakov patients feel at home and recognize only things of the past and when they return to the present, are utterly disoriented and terrified.
The Disembodied Lady (lack of proprioception—inability for body to feel itself)
Ø Polyneuritis: peripheral neuropathy; damage to nerves of the peripheral nervous system, which may be caused either by diseases of or trauma to the nerve or the side effects of systemic illness
Ø Guillain-Barre syndrome: acute polyneuropathy, a disorder affecting the peripheral nervous system; ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk is the most typical symptom; some subtypes cause change in sensation or pain as well as dysfunction of the autonomic nervous system; can cause life-threatening complications, in particular if the respiratory muscles are affected; is usually triggered by an infection
Ø Vestibular impairment: impairment due to the vestibular system (contributes to balance and to the sense of spatial orientation) not working correctly
Ø Labyrinthectomized: n/a; the labyrinth is the inner ear, which is mainly responsible for sound detection and balance
· Sixth sense-sense of one’s body; the body’s ability to recognize itself (proprioception). It is so familiar to us to know that we can control our bodies and that our bodies are ours. This physical knowledge and recognition is at the root of our identities. What happens when we cannot recognize our bodies anymore, or when we cannot control it or when we do not feel as though it’s ours? Trans* people who feel as though they are in the wrong body or those who have dissociation.
· Christina lost all proprioception. She could not move unless she was looking at her body parts while moving. The essential control was gone. She could not feel her body. She had no muscle or tendon or joint sense whatsoever. She had acute polyneuritis (not Guillain-Barre syndrome), but only sensory neuritis (sensory roots of spinal and cranial nerves). Her body was blind to itself.
· Sense of a body works with three things: vision, balance organs, and proprioception. All work together, but if one fails, the others can either compensate or substitute.
· The only thing she could do was use her eyes to move herself. If she closed them, she would fall. Her visual automatism and reflexes became better and more learned and fluid but they never went back to normal. There had to always be a consciousness about her movement. Her movements and voice were all projected, all learned.
· She learned to operate and to lead a possible life, but not the one she used to have. Sacks mentions this disability as being one that society cannot see as one, a sort of blind disability (like lupus). It is an extreme dissociation, but of body as well, not just of mind. She cannot feel nor be certain of her body.
· “She has both succeeded and failed. She has succeeded in operating, but not being…Not all the spirit and ingenuity in the world, not all the substitutions or compensations the nervous system allows, can alter in the least her continuing and absolute loss of proprioception.” I’m not quite sure how much I like how he says she “failed” and that she didn’t “succeed in being”. Though proprioception is possibly the core (or one of the cores) of identity, it doesn’t necessarily mean one has failed to be simply because one lost it.
· It is a terrifying thing to imagine--not being able to feel your body, for your body not to be able to recognize itself. For those who are dissociated and trans* people, there is a body and you can feel it, but it does not feel like your body. In this case, there is no body at all, there is a disembodiment. In my account where I say I feel my identity is not my body, it’s my mind. I feel my body, there is a body, and because it always is there and it can recognize itself, it’s in the background, it’s silent. I don’t have to think about it and I forget about it, but it is always there. To have to be aware of your body constantly because you do not feel as though you belong in it, or because you literally cannot feel it is something completely different. It is a privilege that is extremely difficult for those who do not feel this way to understand.
I don’t think I was that dissociative. There was a feeling of not being “me” and there was a surreal quality to everything and it felt like I was continuously tripping or in a dream but my body was still my own. It was a lot more derealization that dissociation. There was a sort of depersonalization, however (inability accept one’s reflection as one’s own), for example, physically speaking.
There is also that issue of the “invisible” disability, no matter if it’s mental or physical. The age-old argument against depression (“Your life is amazing, you shouldn’t be depressed, you’re just crying out for attention”) belittles the person’s feelings and gives power to the issue itself. Simply because others cannot see it or because it cannot be diagnosed by doctors doesn’t mean it doesn’t exist.
The Man Who Fell Out of Bed (prosopagnosia)
· A patient refuses to get back into bed—he woke up and found a dead leg in the bed with him. Thinking it was a practical joke, he threw it off the bed, and to his surprise, he was dragged along with it. He says that it’s a dead, cold, disgusting, unrecognizable thing and it’s not his. When asked where his leg is, he responds with bafflement—“I don’t know. I lost it. It’s nowhere to be found.”
Ø Cerebral palsy: (CP) group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement
Ø Cerebral diplegia (Little’s disease); spastic diplegia; a form of cerebral palsy that is a chronic neuromuscular condition of hypertonia and spasticity—manifested as an especially high and constant “tightness” or “stiffness”—in the muscles of the lower extremities of the human body, usually those of the legs, hips, and pelvis; the most common type of CP, occurring in almost 70% of all cases
Ø “glove-and-stocking”: a pattern of peripheral nerve disease characterized by a relatively sharply demarcated loss of pain, touch, temperature, position and vibration sensation, accompanied by weakness, muscular atrophy, and loss of tendon reflexes–ex., the 'stocking' pattern of distal diabetic polyneuropathy, characterized by waxing and waning paresthesias that worsen at night
Ø “electrical silence”: in electroencephalography and electromyography, absence of measurable electrical activity in tissue
Ø “evoked potentials”: (EP) the electrical signal recorded from a sensory receptor, nerve, muscle, or area of the central nervous system that has been stimulated, usually by electricity.
· Madeleine J. is a 60 year old congenitally blind woman with cerebral palsy who’s been looked after her entire life. She is very bright and animated, but cannot use her hands. There is no sensory ‘deficit’ however, she can feel and there is ability for her to use her hands but because she’s never used them, she doesn’t feel as though they’re a part of her.
· Sometimes, in the case of injury, people will dissociate themselves from the body part that has been injured even after it has healed. They feel as though their limb is “lifeless”, “useless”, “stuck on”, and what needs to be done is to get them to use their limbs.
· How to get Madeleine to use her hands: the intuition, the instinct is key. One day, her nurse puts her food just out of reach, and Madeleine, hungry and impatient, sticks out her hand to find the food.
· After this first act, she begins to use her hands to recognize all kinds of objects, including people. She begins sculpting, and her sculptures are beautiful.
· Another similar case is that of the almost blind, cerebral palsied carpenter, Simon K. , who made wooden things.
· “He is mildly retarded, an amiable simpleton, in contrast to the passionate and highly gifted Madeleine J. It might be said that she is extraordinary…but nothing like this could possibly be said of simple Simon.” This is kind of a non-PC comment…It’s possible that at the time he wrote this case study, those words were the medically accepted terms, but it still makes me kind of uncomfortable hearing it. I also don’t like the way he says that Madeleine is highly gifted but that Simon is not.
· Acquired agnosia happens—patients feel as though limbs end in stumps or lumps of “dough” are stuck on instead of hands and feet. The trick is to have the patients use them to get the re-realization back. With a subjective feeling, there are objective correlates. Locally, there is “electrical silence” and an absence of “evoked potentials” but once the hands/feet are re-realized, the physiology is reversed. This shows how interrelated the body and mind are and how they aren’t separate at all, sometimes, and how they can influence each other. “It’s all in your head” is not necessarily a good argument, because it’s just as real. Hypochondriacs are just as important as those who have kidney stones. Again, with the “invisible” disability, I think we, as a society, including myself, should be more tolerant, respectful, and accepting of people’s issues. Hysteria is an issue in itself as well.
Phantoms (amputation phantoms)
Ø Tabes; tabes dorsalis/syphilitic myelopathy; slow degeneration of the sensory neurons that carry information to the brain; the degenerating nerves are in the dorsal columns of the spinal cord; help maintain a person’s sense of position, vibration, and discriminative touch; caused by demyelination secondary to an untreated syphilis infection; symptoms include weakness, diminished reflexes, parasthesias (shooting and burning pains, prickling sensations, and formication), hypoesthesias (abnormally diminished sensory modalities), tabetic gait, progressive degeneration of the joints, loss of coordination, personality changes, urinary incontinence, dementia, deafness, visual impairment, impaired response to light
Ø Scotoma: are of partial alteration in the field of vision consisting of a partially diminished or entirely degenerated visual acuity that is surrounded by a field of normal vision
· Phantom-a persistent image or memory of part of the body, usually a limb, for months or years after its loss. This syndrome was explored in great detail by Silas Weir Mitchell, concerning soldiers in the American Civil War. Some are painful, some are not, some are life-like, some distorted. There are also “negative phantoms” or “phantoms of absence.”
· A phantom limb is essential if an artificial limb is to be used. The disappearance of it can be an issue, then. This can be done in many ways. For example, one patient has to “wake up” his phantom—he flexes, slaps the limb sharply, and after the fifth or sixth time, the phantom shoots forth. Only then can he put on his prosthesis and walk.
· A patient, Charles D., stumbles and falls and has vertigo—to him, it seems like the floor is constantly changing; “suddenly the floor seemed further, then suddenly nearer, it pitched, it jerked, it tilted. In consequence, he found himself lurching and pitching, unless he looked down at his feet.” He had tabes. Oliver Sacks himself had a proprioceptive scotoma in which he could see his leg continuously changing.
· What does it mean to be “complete”? What is a “complete” and “normal” human being? Physically and mentally speaking, someone who doesn’t have a loss or excess of anything. Can you be complete if you’re an amputee or otherwise disabled? If you’re mentally ill? Does “complete” come with the hint of “better”? I don’t actually think there is a human being that does not have some bodily issues. The body is not “perfect”. None of these detract from being someone—you are not less because you do not possess something (or possess more than) someone else does. You are simply different…
On the Level (vestibular impairment)
· Mr. MacGregor walks with a tilt but cannot feel it. One of his three mechanisms of proprioception is deficient—his ability to use his balance organs because of Parkinson’s.
· Once he realizes this, he devises a way to “straighten up”—he has a sort of level (the one a carpenter uses) attached to his glasses. By keeping his eyes on it, he can visually see if he is tilted or not. though straining at first, with practice and habit, it becomes easier.
· One of the underlying themes is the power of the patient, and I really like that. In all of these accounts, the patients themselves discover and use methods to help with their issues and to overcome them. The doctor is not so much the central figure as it is the patient. He is the one who figures things out, while the doctor simply tries to help him. The patient is the one in power, with power, and the will they all have to overcome or to help with their issues is moving.
Eyes Right! (stroke affecting right cerebral hemisphere)
Ø Meniere’s disease: disorder of the inner ear that can affect hearing and balance to a varying degree; characterized by episodes of vertigo, low-pitched tinnitus, and fluctuating hearing loss
Ø Glioma: type of tumour that starts in the brain or spine; arises from glial cells; gliomas make up about 30% of all brain and central nervous system tumours and 80% of all malignant brain tumours
· Mrs. S. has suffered a stroke that affects her right cerebral hemisphere. She cannot see, is not even aware of the left side of things. To help with this, in the issue of food, she simply turns around in her wheelchair (to the right) until she can see the food again (the right side). She cannot however find a good way to apply makeup on the left side of the face, though using a video screen has been recently experimented with.
The President’s Speech (aphasia and tonal agnosia)
· Those with aphasia cannot understand the words but can catch on to the meaning because of the tone, the expression, the gesticulation made with the words. Their “feeling-tone” is enhanced. It is difficult to lie because the unconscious gestures will be all too clear to aphasiacs and the inauthenticity will be immediately seen and felt.
· Those with tonal agnosia understand only the words, not the feeling-tone. They cannot tell emotions through tone, only words. Only by the words used can they tell the emotion or the meaning of the speaker, and the facial expressions and gestures. Close their eyes and they cannot tell.
· In all of these accounts of losses, all the patients have attempted to make them up, whether they know of the loss or not (in most cases, they don’t unless told). Through their losses, they develop heightened sensations or abilities and all the patients described deal with their issues with an ingenuity, will, strength, and force that is simply inconceivable to those who have not had to deal with illness. The human body and mind, the human will, the human itself, is so absolutely incredible and complex. I don’t think we give ourselves enough credit. I don’t think we give our bodies enough credit, as well as our minds. Goddamn, we’re beautiful. It blows me away.
Part Two: Excesses
Ø Teratoma: encapsulated tumour with tissue or organ components resembling normal derivatives of all three germ layers; tissues of teratoma may be quite different from surrounding tissues and may be highly disparate
Ø Akinesia; hypokinesia; refers to decreased bodily movement; associated with basal ganglia diseases (Parkinson’s), mental health disorders and prolonged inactivity due to illness
Ø Aboulia: lack of will or initiative and can be seen as a disorder of diminished motivation; unable to act or make decisions independently
Ø Adynamia: lack of strength or vigour due to a pathological condition; often associated with multiple sclerosis and media-frontal lobe lesions
Ø Anergia: a condition of lethargy or lack of physical activity
Ø Mnemonism: the ability to remember and recall unusually long lists of data
Ø Chorea: an abnormal involuntary movement disorder, one of a group of neurological disorders called dyskinesias
· Neurology has no words for an excess of something. “A function works—or it does not; these are the only possibilities it allows.” These issues of excess are not properly treated or even noticed because of this lack of recognition in neurology.
· “The paradox of an illness which can present as wellness—as a wonderful feeling of health and well-being, and only later reveal its malignant potentials—is one of the chimaeras, tricks and ironies of nature.”
· I don’t know how I feel about his usage of the words “monstrous” and “perverse”. I don’t know how negatively he was intending on his words to sound, but I’m not sure how much I like the way he’s saying them, even if he means no offense.
· “Patients are here forced with disease as seduction, something remote from…the traditional theme of illness as suffering or affliction…In disorders of excess there may be a sort of collusion, in which the self is more and more aligned and identified with its sickness, so that finally it seems to lose all independent existence, and be nothing but a product of sickness.” I think this may be the case with people with bipolar disorder sometimes, at least in the manic phase, sometimes. It’s different person to person, but some people that I know, at least from what they’ve told me, say that they are grateful for their manic phase and that it makes them a lot more productive. On the other hand, I know that it’s hard, when one has a mental disability at least, to not let it consume your self. After a while, it is all you know and you are your mental illness.
Witty Ticcy Ray (Tourette’s)
Ø Sleepy-sickness: look below
Ø Encephalitis lethargica: atypical form of encephalitis; attacks the brain, leaving some victims in a statue-like condition, speechless and motionless
Ø Duchenne’s muscular dystrophy (DMD): recessive X-linked form of muscular dystrophy, which results in muscle degeneration and eventual death; caused by a mutation in the dystrophin gene, the largest gene located on the human X chromosome, which codes for the protein dystrophin, an important structural component within muscle tissue that provides structural stability toe the dystroglycan complex of the cell membrane
· In 1885, Gilles de la Tourette discovered a syndrome “ which is characterized by an excess of nervous energy, and a great production and extravagance of strange motions and notions: tics, jerks, mannerisms, grimaces, noises, curses, involuntary imitations and compulsions of all sorts.”
· Before the 1970s, Tourette’s was viewed as mythical and was completely forgotten.
· The TSA (Tourette’s Syndrome Association) raised awareness about the syndrome. “Never before have patients led the way to understanding, become the active and enterprising agents of their own comprehension and cure.” I kind of doubt this, but even if this claim is true, Sacks’s individual patients have done what he has just stated. Sacks is being a bit blind to his own patients here.
· It seems that there is an excess of dopamine in those with Tourette’s (thalamus, hypothalamus, limbic system, and amygdala) (in those with Parkinson’s (midbrain), there’s a lack of it). the drug used with Tourette’s (at the time, I don’t know if it’s still used) is haloperidol (Haldol).
· No drug can be the answer (it can only be an answer) to an issue. There is also the personal approach to it, the patient has to work at it as well. This can be seen in mental disorders—the drug does some of the work, but it is not the answer, it only helps the patient see the answer.
· Ray is 24, and has Tourette’s since the age of 4. His personal life and career are in jeopardy because of this syndrome. However, his Tourette’s gives him creativity in music (drumming). He’s given a small dose of Haldol. He comes back the following week with a black eye and a broken nose—the quick movements are slowed down excessively by the Haldol. He’s gone from one extreme to the other. His tics don’t disappear, they simply become slower and enormously extended.
· “He said he could not imagine life without Tourette’s nor was he sure he would care for it. ‘I consist of tics—there is nothing else’.”
This is the way I know a lot of people who have mental disorders feel. It has become a part of them, a part of their identity, maybe even consumed them, and no matter how detrimental the disorder is to them (and even if they know this), there is still some resistance. This is all they have known, how could they be anything else? How can they compromise their identity? How can they be happy after being so pained all this time? As Evanescence would say, “Lithium, don’t want to lock me up inside…don’t want to forget how it feels without…I want to stay in love with my sorrow, but God, I want to let it go.” (‘Lithium’) can you even become good, well, healthy, happy? I know that when I was depressed, I felt the same way as in the song. There was a pulling and pushing. I knew I needed to get out of it, but it was so seductive, so comfortable, so comforting, a demon that had, perversely, become like an angel to me. It’s fucking hard.
· Sacks suggests that for three months they would do some introspection and see what life without Tourette’s could offer Ray, and then try Haldol again. After that period of time, he goes back on medication and has been on it for the past nine years. Without those three months of exploration, this duration would probably not have been able to be sustained. The drug has helped immensely but he is not as creative anymore. He is slower, less playful, less fun. “He has come to feel, increasingly, that something is missing. Most important, and disabling (?), because this was vital for him—as a means of both support and self-expression—he found that on Haldol he was musically ‘dull’, average, competent, but lacking energy, enthusiasm, extravagance, and joy.” This reminds me of Christina Ricci in “Prozac Nation”, how she says that everything becomes muted and slow. I know some people who have also observed that though they are more stable, they are not as quick, their brain is fuzzy, they are not as creative. With stability, I suppose, comes a price. Maybe it is true what they say about art—that there has to be some element of “crazy” for it to be produced. Without this spark, how can an artist live, both emotionally and economically? It’s very tragic, I think, that there has to be this kind of killing of the soul for some inner peace. What can one do? Hopefully, drugs will increase in their effectiveness and their side effects will be less altering.
· Ray decides to take his medication during the week and to get off of it on the weekends. “Having Tourette’s is wild, like being drunk all the while. Being on Haldol is dull, makes one square and sober, and neither state is really free…You ‘normals’, who have the right transmitters in the right places at the right times in your brains, have all feelings, all styles, available all the time—gravity, levity, whatever is appropriate. We Touretters don’t” we are forced into levity by our Tourette’s and forced into gravity when we take Haldol. You are free, you have a natural balance: we must make the best of an artificial balance.”
· Sacks says that he “has a full life despite Tourette’s, despite Haldol, despite the ‘unfreedom’ and the artifice; despite being deprived of that birthright of natural freedom with most of us enjoy.” I don’t know how much I agree. I feel like he’s belittling Ray’s issues and maybe even pretending that he doesn’t struggle anymore. I think that the on/off Haldol helps immensely, but I also think there’s an ongoing internal struggle. It’s difficult to live with a disorder or a disability and no matter what you do, it will always be there somehow. You will never be the way someone who doesn’t have, never has your issue is. However, there is a unique sense of understanding (that Sacks observes) that comes with living with a disorder/disability (which is, I think, partially why it’s so difficult sometimes to let it go.)
Cupid’s Disease (neurosphylis)
Ø Neurosyphilis: an infection of the brain or spinal cord caused by the bacterium Treponema pallidum; usually occurs in people who have had chronic, untreated syphilis, usually about 10 to 20 years after first infection; symptoms include: abnormal gait, blindness, confusion, dementia, depression, headaches, incontinence, irritability, numbness in toes, feet, or legs, poor concentration, seizures, neck stiffness, tremors, visual disturbances, and muscle weakness
Ø Spirochetes: bacteria
· Natasha K (88) feels a sort of change, a wonderful, invigorating change which makes her feel more alive than she has in years. She’s worried though because she’s feeling too well. She had syphilis when she was younger and it had come back as cerebral syphilis. How to treat it? Mrs. K. doesn’t know if she wants it treated. “I know it’s an illness, but it’s made me feel well. I don’t want it to get worse, that would be awful, but I don’t want it to be cured—that would be just as bad…Do you think you could keep it just as it is?” Penicillin is given to her, which kills the spirochetes but can do nothing to reverse the cerebral changes.
I think this is a great account on several levels. First, it shows how all diseases/disorders are not necessarily bad and don’t have to be treated if the symptoms are not detrimental. Second of all, it shows the willingness of Sacks to work with his patients and to listen to what they have to say and to respect what they want rather than blindly pursuing an automatic response of “This is bad, we need to fix this, doesn’t matter if you don’t think it’s bad, it is, so tough luck.”
· Miguel O. has neurosyphilis as well and is very creative with his drawings. Given this picture (a square with a smaller circle within it and within the circle an x), he is asked to reproduce it, and draws an open carton. A few days later, he draws a kite and then adds a boy who’s flying it. Several days after that, on Haldol, he draws the image exactly, but a bit smaller. There is no more animation or imagination. “I don’t ‘see’ things anymore. It looked so real, it looked so alive before. Will everything seem dead when I am treated?”
· The opposite happens with those who have Parkinson’s who are put on L-Dopa.
· “A wellness can be genuine even if cause by an illness. And such a paradoxical wellness may even confer a lasting benefit. We are in strange waters here, where all the usual considerations may be reversed—where illness may be wellness, and normality illness, where excitement may be either bondage or release, and where reality may lie in ebriety, not sobriety.” Sometimes, by fixing or curing the illness, you actually do more harm than good. It’s not as black and white as one would think…there is sometimes no harm in keeping the illness or disorder.
A Matter of Identity (Korsakov’s)
· Mr. Thompson suffers from Korsakov’s (similar to Jimmie G in ‘the Lost Mariner’). He cannot remember anything for more than a few minutes or even seconds and he cannot recognize, or mis-recognizes people. He’s in a constant world of flux. Being denied the reality, he instantly makes up a new one. “[He] must literally make himself (and his world) up every moment.”
· We, all of us, have a life-story, a continuous narrative, whose sense, is our lives, is our identities. Without it, we have to re-possess it, or attempt to.
· Mr. Thompson was attempting to do this by going through a narrational frenzy. He is desperate. “The world keeps disappearing, losing meaning, vanishing—and he must seek meaning, make meaning, in a desperate way, continually inventing, throwing bridges of meaning over abysses of meaninglessness.”
· People find him funny at first, but they are disquieted after a while. “He never stops…he’s like a man trying to catch something which always eludes him.”
· The bridges, the patches fail to work because they are lies, confabulations, and do not mesh with reality.
· Mr. Thompson realizes this to an extent—he’s like a man who seems to be continuously wrong after responding with an answer and doesn’t know why he’s wrong. There is a sense of pressure, bewilderment, mounting confusion, and panic possibly. However, what “saves” him are the lies, the patches. They are both a blessing and a curse.
· There’s a strange loss of feeling, judgment, a distinguisher between ‘real’ and ‘unreal’, a sort of indifference.
· Sacks says that he was convinced “that there was some ultimate and total loss of inner reality, of feeling and meaning, of soul.” He claims that if the unending joke that Mr. Thompson puts out is done to cover over the desperation, it is one he does not feel, and his incessant struggle to find it is what impedes him. “If only he could be quiet, one feels, for an instant…--then reality might seep in; something genuine, something deep, something true, something felt, could enter his soul.” It is not just the memory loss, but a feeling loss. One does not feel as though there is a person remaining (whereas with Jimmie G, one did).
· However, there is a peace. Away from people, in nature, he recovers his quiet, the same way Jimmie recovers his in church.
· I don’t like the way in which Sacks dehumanizes Thompson, and the way he kind of assumes that he doesn’t really feel a desperation most of the time. I also think he could have definitely written more on Thompson’s connection with nature and how that did help him rather than focus on his issues.
Yes, Father-Sister (nihilism)
Ø Multiple sclerosis: an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms; usually occurs in young adults and is more common in women
· Mrs. B. has essentially become a nihilist. There is no more meaning, no more care. This personality change was brought on by a huge carcinoma involving the orbifrontal aspects of both frontal lobes.
· This nihilism, or “joking disease”, in which everything becomes superficial can occur in cerebral multiple sclerosis and frontal lobe syndromes.
The Possessed (Tourette’s)
· A more extreme case of Tourette’s is observed by Sacks on a street in New York City. A woman caricatures the expressions of about forty or fifty passersby within two minutes. The passersby are all bewildered, some outraged. After this, the woman goes into an alleyway, “and there, with all the appearances of a woman violently sick, she expelled, tremendously accelerated and abbreviated, all the gestures, the postures, the expressions, the demeanours, the entire behavioural repertoires, of the past forty or fifty people she had passed”—within ten seconds.
· Sacks compares Korsakov’s with extreme Tourette’s—at points, there may be an identity issue with both. But while the Korsakov patient does not know (theoretically) of the issue, the Tourette’s patient does. Can the identity survive, or will it be “taken over, possessed and dispossessed, by every immediacy and impulse”? Sacks’s answer: “In most cases, he succeeds—for the powers of survivor, of the will to survive, and to survive as a unique inalienable individual, are, absolutely the strongest in our being: stronger than any impulses, stronger than disease. Health, health militant, is usually the victor.”
In this part, most of the patients with “excesses”, work with them and transform them into creative activities—music, drawing, etc. There is a way to transform an issue into something positive. This can be seen the most through art—negative emotions or even, emotional issues become beautiful pieces of work. Through this, I think, the issue becomes a bit easier to live with, though I’m not sure how it would help in the process of removal. It can become a part of you, and thought you may know there are obvious cons, the pros of the issue are seen as well. I think it all depends on how you want to live your life—not all “issues” need to be resolved, unless they really are problems for the individual/and they want them to be resolved). Sometimes, by killing (or stifling) the issue, you stifle an important positive part as well, and that really may be the problem. I find it interesting that nihilism is in this section, and I’m not quite sure why it is.
Part Three: Transports
· Dreams, visions, are not often seen as a neurological or medical issue, but more of a psychological issue.
· “All the transports described…do have more or less clear organic determinants…This does not detract in the least from their psychological or spiritual significance.” I like how he doesn’t devalue dreams, or visions, or anything of the sort that is not “real”. If it’s real to you, then sometimes, that’s very important and that is not necessarily something that should be taken away, even if it is not real to others. Examples,: beliefs in ghosts or the supernatural, spiritual visions, hallucinations, feelings of being something different than you are, etc.
· “The theme of this section is the power of imagery and memory to ‘transport’ a person as a result of abnormal stimulation of the temporal lobes nd limbic system of the brain.”
Reminiscence (musical epilepsy)
Ø Amusia: a musical disorder that appears mainly as a defect in processing pitch, but it also encompasses musical memory and recognition
· Mrs. O’C. (88) was a bit deaf but nothing else. One night, she dreamt of her childhood in Ireland, and especially of the songs. When she woke up, the music was still playing, loud and clear. She checked the radios and everything, but the music was in her head. It was sometimes very loud and would make conversation difficult.
· She had had a stroke/temporal lobe seizures/thrombosis in her right temporal lobe, which are the basis of “reminiscence” and experiential hallucinations. As the stroke subsided, so did the songs. Several months later, they were entirely gone.
· She expressed relief that they were gone, but also sadness, because she felt like she had regained a bit of her childhood then.
· Mrs. O’M., also in her eighties and a bit deaf, had been hearing three songs over and over in her head for four years. She didn’t like these songs at first (and grew to hate them) and they didn’t hold much significance to her. She was suffering from musical epilepsy as well.
· “Experiential hallucinations” can be triggered by stimulating the seizure-prone points of the cerebral cortex. These call forth intensely vivid hallucinations of events, people, music, from one’s past. “The brain retained an almost perfect record of every lifetime’s experience, that the total stream of consciousness was preserved in the brain, and, as such, could always be evoked or called forth, whether by the ordinary needs and circumstances of life, or by the extraordinary circumstances of an epileptic or electrical stimulation.” This calls into question whether information is ever truly repressed. Does this mean that with the appropriate stimulation, we can recall certain things that we have forgotten?
· Why those particular songs? One doctor, Penfield, states that there is no significance in the selection involved, though Sacks does not completely agree with him.
· Mrs. O’M. was put on anticonvulsants and the music stopped. She said she did not miss them at all. For Mrs. O’C, the music was comforting and welcoming, and she recaptured a part of her childhood that she never had known. It was like the opening of a door that had been closed her entire life. It can be very positive for the patient to experience these hallucinations. “Unlike Mrs. O’M, who wanted treatment, Mrs. O’C declined anticonvulsants: ‘I need these memories’.” After the door closed, she said “I’m glad it happened. It was the healthiest, happiest experience of my life. There’s no longer a great chunk of childhood missing. I can’t remember the details now, but I know it’s all there. There’s a sort of completeness I never had before.”
· These experiences raise fundamental questions about memory. There is a “melodic” and “scenic” nature of inner life. These are, medically, accounted by “programmes”, “algorithms”, etc. But can these suffice for the vivid quality which makes it experience? Sacks states no. “Computational representations could never…constitute…those representations which are the very thread and stuff of life.” There is a gulf between what we learn from patients vs. what doctors tell us. Is there a way to bridge the chasm? “Personal patters…would have to take the form of scripts or scores—as abstract patterns, patterns for a computer, must take the form of schemata or programmes.”
· “Even though the preliminary form may be computational or programmatic, the final form of cerebral representation must be, or allow, ‘art’—the artful scenery and melody of experience and action.”
· An “art” therapy may be just as important as “systematic” therapy.
· I like how Sacks compares the two women—again, how one patient may have an issue with the problem while another one may not. Not every patient is the same and every patient may have different experiences and pros/cons of the perceived problem. I also appreciate that Sacks recognizes that there are other therapies besides the “systematic” one, or drugs.
Ø Oneirophrenia: a hallucinatory, dream-like state caused by several conditions such as prolonged sleep deprivation, sensory deprivation, or drugs; has some of the characteristics of simple schizophrenia, such as a confusional state and clouding of consciousness, but without presenting the dissociative symptoms which are typical of this disorder
· An example of forced reminiscence can be induced by L-Dopa—a 63 year old woman had progressive postencephalitic Parkinsonism since 18, and had been institutionalized in a state of “almost continuous oculogyric ‘trance’”. When given L-Dopa, there was almost normal speech, movement, and increased libido. The increasing excitement necessitated a reduction of the dosage, and though the speech and movement were not affected, the memories of sexual words were forgotten.
· “Everybody is stacked with an almost infinite number of ‘dormant’ memory-traces, some of which can be reactivated under special conditions…they are indelibly etched in the nervous systems, and may persist indefinitely in a state of abeyance.” If memories that one has repressed or suppressed can come back, I wonder if I could do that with my gap when I was young…
A Passage to India (reminiscent epilepsy)
· Bhagawhandi P., an Indian girl of 19 with a malignant brain tumour had temporal lobe seizures, in which she would go into a sort of trance/dreamy state and remember her life in India. The closer she got to death, the more vivid her “dreaming” became.
The Dog Beneath the Skin (chemical alteration from drug usage)
· Stephen D, 22, did drugs (cocaine, PCP, amphetamines). He dreamt one night that he was a dog and that his sense of smell was extremely heightened. He woke to find himself in such a world—he could draw (whereas before, he had no artistic abilities), but primarily, he could smell. He was like a dog, he felt an entirely new world of smells open up to him (before, he hadn’t been very conscious of it). While before, he had been more preoccupied with the abstract, he found that he was now more concerned with the concrete. After three weeks, his senses returned to normal. He was both relieved and at the same time, a bit sad. “I’m glad to be back, but it’s a tremendous loss.”
I really like how Sacks includes someone who’s had neurological changes because of drugs. Everywhere I see, the medical establishment discredits and devalues the changes that come with doing drugs. They are just as real, just as significant as those that are not induced by drugs. Just because you chose to do something doesn’t mean the effects aren’t just as important as for those who didn’t choose to do something that will affect them in that way. I could relate this experience to any one of my psychedelic trips, but I think the two most relevant are the times that I hallucinated afterwards for six months and the time when I felt like a chameleon. The former, I am certain was partially due (if not completely due) to the Hawaiian baby woodrose seeds and yohimbine mix, but that doesn’t make the situation any less grave. The former—it’s something that cannot be explained if one has not experienced it. And after the trip, it’s the same kind of feeling—you’re glad to be back but it’s also a tremendous loss. What’s comforting to me, at least, is that I’ll always know I had that experience and can remember how I felt.
· A man who sustained a head injury had considerable damage to his olfactory tracts. He ceased to smell, and was distressed by it: “Sense of smell? I never gave it a thought. You don’t normally give it a thought. But when I lost it—it was like being struck blind. Life lost a good deal of its savour.” Months later, things started to regain their “savour”. However, his tracts were still damaged and there was no hope of recovery. What was happening was a “controlled hallucinosis”. He would evoke the smell, unconsciously, and with such intensity that they were perceived as “real”. For someone who doesn’t have a very good sense of smell in the first place, I wonder how it would be if I lost it completely. Would I be distressed or would it simply be a nuisance? I feel like it would be the former. Though smell is not, for me, a big thing (even less than for those who have a more acute sense of it), I feel like I would still miss it greatly. You don’t realize what you have until it’s lost. An interesting thing to think about is the benefit of hallucinations, whether visual, auditory, or in this case, olfactory, and the benefit of something that is not “real”.
· Donald killed his girlfriend while on PCP. He could not remember the act at all, it was a complete black out. It was debated whether he should be imprisoned for “those who commit them are considered neither responsible nor culpable.” He was sent to a psychiatric hospital. While biking one day, he sustained a massive head injury—massive bilateral subdual hematomas. He was in a coma for almost two weeks and then started to recover. However, he started to remember everything about the murder. No experiential hallucinations where the person is re-experiencing or re-enacting a deed had ever been heard of.
· “Donald has not forgotten, or re-repressed, anything of the murder…but he is, no longer obsessed. The final therapy, as Freud said, is work and love.”
The Visions of Hildegard
Ø Phosphenes: a phenomenon characterized by the experience of seeing light without light actually entering the eye
· Hildegard of Bengen (1098-1180), a nun, had many visions which were caused by a shower of phosphenes in transit across the visual field, their passage being succeeded by a negative scotoma.
· Her visions were instrumental in directing her towards a life of holiness and mysticism. They provide a unique example of the manner in which a “physiological event, banal, hateful or meaningless to the vast majority of the people, can become, in a privileged consciousness, the substrate of a supreme ecstatic inspiration.”
What I like about this part is that Sacks does not devalue hallucinations and the like as simply a problem and an “unreal” thing, whether they come from an electrical stimulation or drugs. Hallucinations, though they are not real because they are not part of “reality”, are real because they exist, and they can become part of someone’s reality, and that is perfectly alright. I find the hypothesis that all experiences, even those repressed and/or suppressed , can be brought out, extremely interesting and if true, a very valuable discovery.
Part Four: The World of the Simple
· He uses several words, such as ‘idiots’, ‘retardates’, and ‘simpletons’ to describe those who are autistic. As I’ve said before, these terms are not medically accepted right now, and even though they may have been then, it still makes me uncomfortable seeing them written.
· “Qualities of mind which are preserved, even enhanced, so that, though ‘mentally defective’ in some ways, they may be mentally interesting, even mentally complete, in others. Qualities of mind other than the conceptual (in the simple mind, in the minds of children and ‘savages’—though, as Clifford Geertz repeatedly emphasizes, those categories must never be equated: savages are neither simple nor children; children have no savage culture, and the simple are neither savages nor children.)” I’m not sure how I feel about him saying that the “simple” are not complete. I feel like he means well, but he’s degrading them at the same time. And what’s with the ‘savage’? It’s 1975, not the 1800s. It’s absolutely ridiculous that he’d call other civilizations that kind of term.
· “Their world is vivid, intense, detailed, yet simple, precisely because it is concrete: neither complicated, diluted, nor unified, by abstraction. Concreteness is often seen by neurologists as a wretched thing, beneath consideration, incoherent, regressed. If a man loses the ‘abstract-categorical attitude’ (Goldstein), or ‘propositional thought’ (Hughlings Jackson), what remains is subhuman, of no moment or interest. I call this an inversion because the concrete is elemental—it is what makes reality ‘real’, alive, personal and meaningful. All of this is lost if the concrete is lost. This is what we see in Zazetsky—‘the man with a shattered world’—he remains a man, quintessentially a man, with all the moral weight and rich imagination of a man, despite the devastation of his abstract and propositional powers. He is a man with his emotions and imagination wholly preserved, perhaps enhanced. His world is not ‘shattered’, despite the book’s title—it lacks unifying abstractions, but is experienced as an extraordinarily rich, deep and concrete reality. “
· “Conceptually, then, mental defectives may be cripples—but in their powers of concrete and symbolic apprehension they may be fully the equal of any ‘normal’ individual.” Again with the words. “Cripple” is not something, I think, that is appropriate to say about anyone who may not be physically disabled (though I’m not sure if even then it would be appropriate).
· Rebecca is 19 and has degenerative myopia and cerebral/mental defects. However, she has a fantastic grasp of figurative language—poetry, metaphors, etc.
· “When I first saw her, I saw her merely, or wholly, as a casualty, a broken creature, whose neurological impairments I could pick out and dissect with precision. The next time I saw her, it was all very different. I didn’t have her in a test situation, ‘evaluating’ her in a clinic. This was my human, as opposed to my neurological, vision. “
· Sacks notices that the IQ tests given her only decomposed her to deficits and didn’t show him any of her positive powers, her ability to perceive the real world—the world of nature, and perhaps of the imagination. “They had given me no intimation of her inner world, which clearly was composed and coherent, and approached as something other than a set of problems or tasks”.
· “Our ‘evaluations’ are ridiculously inadequate. They only show us deficits, they do not show us powers; they only show us puzzles and schemata, when we need to see music, narrative, play, a being conducting itself spontaneously in its own natural way”.
· “It was perhaps fortunate that I chanced to see Rebecca in her so-different modes—so damaged and incorrigible in the one, so full of promise and potential in the other—and that she was one of the first patients I saw in our clinic. For what I saw in her, what she showed me, I now saw in them all. “ I feel like he’s going from one end to the other—he’s devaluing these patients and then he’s not, and then he does it again. I feel like there might be some sort of, perhaps, ableism? I don’t think it’s condescension, but it’s some sort of non-understanding and non-empathy that he shows. And especially with his comments on her abilities, it seems like he’s blind to the whole situation.
· “As I continued to see her, she seemed to deepen. Or perhaps she revealed, or I came to respect, her depths more and more. They were not happy depths—no depths ever are—but they were predominantly happy for the greater part of the year. “
· Her grandmother died in November.
· “Rebecca was pressed into a variety of workshops and classes. It didn’t work with her, it didn’t work with most of them. It was not, I came to think, the right thing to do, because what we did was to drive them full-tilt upon their limitations, as had already been done, futilely, and often to the point of cruelty, throughout their lives. We paid far too much attention to the defects of our patients. “
· “The term ‘retarded’ suggests a persisting child, the term ‘mentally defective’ a defective adult; both terms, both concepts, combine deep truth and falsity.”
· “Rebecca was removed from the workshop she hated and managed to enroll in a special theatre group. ‘I’m like a sort of living carpet. I need a pattern, a design, like you have on that carpet. I come apart, I unravel, unless there’s a design’. “
· “Now if one sees Rebecca on stage…one would never even guess that she was mentally defective. “ Tsk. I’m conflicted as to how to feel about how he portrayed Rebecca. There are some good points that he’s put out there, but his vocabulary makes me extremely uncomfortable.
· “The power of music, narrative and drama is of the greatest practical and theoretical importance. Uncouth movements may disappear in a moment with music and dancing—suddenly, with music, they know how to move. We see how the retarded, unable to perform fairly simple tasks involving perhaps four or five moments or procedures in sequence, can do these perfectly if they work to music. Thus music, or any other form of narrative, is essential when working with the retarded or apraxic—schooling or therapy for them must be centred on music or something equivalent. “
A Walking Grove
· Martin A. 61, Parkinson’s, had had nearly fatal meningitis is infancy which caused retardation, impulsiveness, seizures, and some spasticity on one side.
· He had an amazing music memory. He could remember more than 2,000 operas. He also knew New York City street by street and knew the routes of all its buses and trains.
· Sacks says the word “freaks”…I just…I don’t even.
· Martin had a large affinity toward music and singing, partially because of his father’s affinity toward music as well. Music was the way in which they connected and how Martin remembered his father. What was important was the “spirit of music”.
· “I thought it curious and moving that Martin, a retardate, should have this great passion for Bach. Bach seemed so intellectual—and Martin was a simpleton. What I did not realize was that for all of his intellectual limitations, Martin’s musical intelligence was fully up to appreciating much of the technical complexity of Bach; but, more than this—that it wasn’t a question of intelligence at all. Bach lived for him, and he lived In Bach. “
· “One speaks of ‘idiot savants’ as if they had an odd ‘knack’ or talent of a mechanical sort, with no real intelligence or understanding. This, indeed, was what I first thought with Martin—and continued to think until I brought in the Magnificat. Only then did it finally become clear to me that Martin could grasp the full complexity of such a work and that it was not just a knack, or a remarkable rote memory at work, but a genuine and powerful musical intelligence. One must wonder whether it may not be true of all ‘idiot savants’: that they may be truly and relatively intelligent, and not just have a mechanical ‘knack’, in the specific realms—musical, numerical, visual, whatever—in which they excel. It is the intelligence of a martin, a Jose, the twins, albeit in a special and narrow are, that finally forces itself on one; and it is this intelligence that must be recognized and nurtured.”
· The twins, John and Michael, 26, were ‘idiot savants’ and were seen by sacks in 1966. They were already famous by that point for being able to recall any sort of historical date to the day of the week. They could memorize extremely large numbers and they could remember every detail of their lives. Though they could memorize numbers, they could not calculate at all—neither addition, subtraction nor multiplication or division. They “saw” the numbers. In addition, they could recite up to 10 or 12 digit prime numbers.
· “The reality is far stranger, far more complex, far less explicable, than any of these studies suggest, but it is not even to be glimpsed by aggressive formal ‘testing’, or the usual 60 minutes-like interviewing of the twins. Not that any of these studies, or TV performances, is ‘wrong’. They are quite reasonable, often informative, as far as they go, but they confine themselves to the obvious and testable ‘surface’ and do not go to the depths—do not even hint, or perhaps guess, that there are depths below. One indeed gets no hint of any depths unless one ceases to test the twins, to regard them as ‘subjects’. One must lay aside the urge to limit and test, and get to know the twins—observe them, openly, quietly, without presuppositions.”.
· “They had a certain self-sufficiency and serenity in their lives with the ‘friendship’ of the numbers…This serenity was, in fact, interrupted and broken up for ten years later, when it was felt that the twins should be separated—‘for their own good’, to prevent their ‘unhealthy communication together’ and in order that they could ‘come out and face the world…in an appropriate, socially acceptable way.’ They were given jobs and they kept themselves clean. This is the positive side—but there is a negative side too (not mentioned in their charts, because it was never recognized in the first place.) deprived of their numerical communion’ with each other, and of time and opportunity for any ‘contemplation ‘ or ‘communion’ at all…they seem to have lost their strange numerical power, and with this the chief joy and sense of their lives. But this is considered a small price to pay, no doubt, for their having become quasi-independent and ‘socially acceptable’. “
· Nigel Dennis comments: ‘we are left with a genius who has had her genius removed, leaving nothing behind but a general defectiveness. What are we supposed to think about such a curious cure?’
· “In the case of the twins, now they are separated, now the personal and emotional centre of their lives, there is no longer any sense or centre to their lives.”
The Autist Artist
· Jose, 21, autistic, has very bad seizures, but he can draw and his drawings have a personality that is incredible and technically speaking, they’re very good as well.
· “Imagination, playfulness, art are precisely what one does not expect in idiots, or idiots savants, or in the autistic either. Such at least is the prevailing opinion. No allowance is made for an individual, let alone a creative, personality.”
· Psychomotor seizures are associated with disorder in, or damage to, the temporal lobes, and severe temporal-lobe disorder. the temporal lobes are also associated with the auditory capacities, and, in particular, the perception and production of speech.
· Jose had become mute (which the doctors thought was due to the seizures). He had had seizures since he was very little and had been confined in the basement of his house for years without company.
· “Hospitals, state hospitals, are often seen as ‘total institutions’ geared mainly to the degradation of patients. Doubtless this happens, and on a vast scale. But they may also be ‘asylums’ in the best sense of the word: places that provide a refuge for the tormented, storm tossed soul, provide it with just that mixture of order and freedom of which it stands in such need.”
· “Is being an island, being cut off, necessarily a death? It may be a death, but it is not necessarily so. For though ‘horizontal’ connections with others, with society and culture, are lost, yet there may be vital and intensified ‘vertical’ connections, direct connections with nature, with reality, uninfluenced, unmediated, untouchable, by any others. Is there any ‘place’ in the world for a man who is like an island, who cannot be acculturated, made part of the main? Can ‘the main’ accommodate, make room for, the singular?” Jose began drawing for some publications. His skills could have been used very extensively by companies. In Jose’s case, the answer to the question if the main can make room for the singular is yes. I like the way Sacks acknowledges that one may not necessarily need to be around society to feel accomplished or to be an ‘entire’ person. A man can be an island and if he prefers that, that is perfectly fine. Not everyone needs society to be happy. However, the question is if society can accept, not only tolerate, but accept the island-man (especially if the island-man wants to mostly be left on his island). I think this question is yet to be discovered, but I think that it can happen.
· Sacks makes a comparison, or rather a non-comparison between Einstein and Jose. He says that both have issues with loneliness, but then he goes to state that one cannot compare Jose, someone who’s autistic with Einstein, a genius. Another strike for Sacks.
In this section, Sacks disappointed me greatly. He stated some very good points that sounded accepting but then he went right back and devalued and insulted his patients. It is unacceptable.
Overall, this book was extremely enlightening and insightful. The ethical questions posed are integral to understanding ourselves, our bodies, our minds, others, those who are different from us. The questions asked and the dilemmas that may come up are not easy to solve. Sacks does not offer solutions to most of them, but he does try to make sense of them as much as he can. And on the large part, I love the way that he dealt with the questions at hand. His empathy toward his patients, his interaction with them, and his understanding of what they desire and need, rather than going through a formulaic process was, on the most part, refreshing. Many parts in the novel were moving.
However, there were times where I was rudely shocked into noticing that Sacks uses inappropriate terms to characterize his patients, especially in the last section. I don’t know whether it is because of the medical terminology at the time. If not, his comments and assumptions are extremely rude, inappropriate, and frankly speaking, unacceptable. There is a certain condescension that I noticed in the last part, and especially when he is discussing those who are autistic.
The writing style is not very hard to follow but can be a bit dense sometimes. The medical terminology that he uses, to me, was not a problem and I did not mind looking up the definitions of the disorders and illnesses that he named, though to some it might seem more of a chore. One should keep in mind that this is not so much of a layman’s read, because all of these stories were actually case studies. He waxes poetic and philosophic which I did not have a problem with most of the time, but I did feel like sometimes he got carried away with the writing. This is not one of those books that can be read in a day. It requires frequent pauses and much thought processing.
As I said, I did enjoy this book very much and I do recommend it to anyone who would be interested in learning more about neurology and how grey the medical world can be. It is not just for medical students or those who are interested in health care, but rather, a book for everyone. Be careful however, of the language that he sometimes employs and take his “empathy” with a grain of salt.