HOLISTIC INTERVENTIONS FOR THE PERSONALITY-HABILITATION OF BRAIN-DYSFUNCTIONAL PERSONS--A NEW PARADIGM
draft -- Feb. 12, 2002
SECTION I. OVERVIEW
Around December, 1997 I began to experience a blunting of affect that an MRI the next June showed probably resulted from cerebral atrophy, particularly frontal. In September, 1998 I was diagnosed with Alzheimer's disease. This blunting of affect, which I had taken at first as mild depression and then as mellowing associated with aging, meant that I had begun to irreversibly lose my personality. I would have poignantly grieved the loss if I could have still done that. Instead I felt a dull sorrow, all the more dysphoric for its dullness, like bereaved or depressed persons feel when they've lost even their tears. I retained, and retain, my long-term memory of who I used to be and how I used to feel, along with a degree of verbal intelligence. Thus I can write this.
I retained an acute sensitivity to music, but I could not feel it nourish my soul the way I used to. Even while experiencing an new and enjoyable presence with music I was sadly aware of the transitoriness of my reanimation. I sympathized with AD-patient Cary Henderson (1998), who continues to love Mahler but laments that it now makes him want to be somebody he's not. I felt for the prayer of Killick's patient (1994): "Please give my back my personality!"
Oliver Sacks (1998) is sensitive to the phenomenology of transitory animation, and quotes Auden: "You are the music, while the music lasts." He notes that musical intelligence may not only be preserved in dementia but even heightened. And he rhapsodizes:
"In dementias, one may find all sorts of specific losses … and, as the disease worsens, a reduction of personal identity. And yet this reduction is virtually never complete; it is as if identity has such a robust, widespread neural basis; as if personal style is so deeply ingrained in the nervous system that it is never wholly lost, at least while there is still any mental life present at all. (This, indeed, is what one might expect if the personal quality of experience and feeling and thought has molded the structure of the brain from the start.) And it is this that makes a continuing possibility of being affected by music, even in the most deeply damaged patients, long inaccessible to language and most other modes of communication. For it is the inner life of music that can still make contact with their inner lives, with them; that can awaken the hidden, seemingly extinguished soul; and evoke a wholly personal response of memory, associations, feelings, images, a return of thought and sensibility, an answering identity."
"The question is whether this newly created ... identity can achieve any sort of stability or permanence, or whether it must vanish along with the music. Indeed, this is the central question in relation to all music therapy--but particularly tantalizing, poignant, in the case of autism, for it may provide the first, or only, glimpse of a possible identity."
Sacks reports encouraging evidence that music can sometimes inaugurate an integrative process in autistic persons which can lead to "marked improvement in social skills and general adjustment." My goal, however, reaches far beyond this. I want to recover and maintain a high quality of personality as my neurologic deficit increases, and beyond this, use my experience to help persons with autistic symptomatology.
Recently I found myself, with faint surprise, responding to music in a way I hadn't for four years. It took a while to for it to register that something really important had happened. Thus I don't remember just when the experience happened or what the music was--that wasn't important. I was no longer experiencing a diminished self! I was once again experiencing a self that was nurtured and could be nurtured by music. And I soon confirmed that this was not only a matter of that music and not only a matter of music. I had experienced a rebirth of selfhood. Not a restitution of a normal self in a way that would make me doubt the brain disease, but, rather, a new integrity and integration. An analogy would be to a person who has felt that a physical injury which deprived him of normal sexual expression had pathetically diminished him as a sexual being. But then he awakens to the realization that he has lost a cherished channel for his sexuality, but not its essence.
Analyzing my reawakening, I see it as an unexpected result of an experiment in meditation. This has led me to develop a theory. I will argue in this paper that the richness of cognitive-processing in response to music that Sacks described is sufficient for the establishment and maintenance of selfhood, and suggest how it can be channeled in that direction.
II. THEORY OF HABILITATION OF PERSONALITY
In the normal infant or small child, personality develops in the context of simultaneous response to a pleasing environmental stimulus and to the pleasure of a trusted adult in that response. Some stimulus induces the infant to coo with delight, then he sees the parent smile, then he integrates this complex experience into the unfoldment of his personality. This is prototypical for personality development in general. A background of quiet trust and expectancy enables a pleasurable focus of neural organization to have widely diffuse resonances and ramifications.
Neuropathology that induces asimultagnosia and weakness in dividing attention (e.g., from degenerative disease atrophying the frontal and parietal lobes, as in my case) makes personality-organization difficult. If not actively growing, a personality tends to stagnate, fragment, and disintegrate.
I'm arguing that the toxicity for personality of brain dysfunction results from dissociation. This explains parallels between the personality sequelae of brain damage, alcoholism, and trauma, and, of course, suggests that interventions toward personality integration in the latter pathologies might be adapted for the former.
It is already standard to offer brain dysfunctional persons music they enjoy in an atmosphere of human warmth and friendliness. Why isn't there more benefit to personality? I would argue that in addition to issues of pathological dissociation there are those of normal dissociation. Normal socialization implies the capacity to dissociate from one's deeper personality issues and "get along." Thus in normal persons strength in social skills and strength in self-expression are not highly correlated. Musicians who enjoy creating music and are confident that others can enjoy their music don't necessarily have mature and well-integrated personalities. This supports the hypothesis that conventional music therapy conducted in an atmosphere of trust, warmth and friendliness does not succeed in simulating the environment conducive to normal personality development. It is, rather, an environment for developing social skills, which are important in themselves, of course, and related, but not the same.
Learning tends to be state-dependent, and personality integration takes place in an affective state integrating focal and highly diffuse ("oceanic") awareness, while the learning of social skills occurs in a more readily accessible affective state integrating focal and moderately diffuse awareness. This explains why the serendipitous combination of meditation and music (it was not "meditative" music) could have its effect.
A corollary of the foregoing analysis is that if a brain-dysfunctional person has sufficient simultagnostic and attentional capabilities to learn rudimentary social skills, he may well, with suitable interventions, have remarkable capacities for personality integration.
My impression is that people who meditate as much as possible are not notable for the development of their personalities, any more than are people who make music as much as possible are. People who care to be balanced between the two activities do somewhat better, but not to an extent that would be inspiring for persons confronting the tremendous difficulties of dementia or autism. To achieve the requisite integration of focal and oceanic awareness will require thoughtful and careful analyses and interventions.
I used "oceanic" to stress the highly diffuse quality of the state I am concerned with, but this word has some misleading connotations. I'd rather say "Dawn consciousness," and explain what I mean by that. To specify Dawn consciousness, I want to remove some of the connotation of extraordinariness and profundity from "oceanic," but add a tint of warmth and expectancy. Zen speaks of "beginner's mind"--Dawn consciousness takes this and adds emotional warmth. Dawn consciousness is a species of Hope. One example of Dawn consciousness is that shared by an infant at play and a trusted adult.
III. OLIVER SACKS' REHABILITATIVE EXPERIENCE
In _A Leg to Stand On_ (1984), Oliver Sacks has a beautiful evolutionary description of Dawn consciousness, antecedent to the reintegration of his traumatized nervous system via Mendelssohn's Violin Concerto. I will argue that Sack's experience, of the evolution of Dawn consciousness followed by appropriate music, which is analogous to the experience I reported at the beginning of this paper, is paradigmatic for the development of powerful interventions.
After a fall which damaged the nerves in his left leg and paralyzed it, Sacks experienced a strange loss of "internal representation" of the leg, so he couldn't feel it or remember it as his own. This central ramification of his injury made him vulnerable to permanent paralysis even when the leg healed. Sacks felt that there wasn't any way he could exercise his leg since, so to speak, he couldn't find it and had no idea where to look for it. And he knew he could not trust Time as a healer. His only recourse was to turn his attention to the "abyss" into which his leg had fallen and describe his experience. .
Let me pause to note that brain-dysfunctional persons can often observe and describe their internal states far better than would be expected from their general level of functioning. This is because such states are stable and closely accessible, and because of their motivation. Sacks' superior verbal intelligence is evident in his report, but it was not at all necessary for the meditation on emptiness which he performed.
Sacks recalled Nietzsche, "If you stare into the abyss, it will stare back at you." "This involved, first, a very great fear." Gradually he realized: "I had to be still, and wait in the darkness." Finally, he turned to the mystics, "for they seemed to hint at some secret, impossible hope, where [he] could find no reason to hope. But finally, the Metaphysicals and mystics were laid aside, and there remained only the Scriptures, the impossible faith." Sacks quotes Psalm 71 and concludes: "Secretly, half-skeptically, hesitatingly, yearningly, I addressed myself to this unimaginable 'Thou.'" Sacks was experiencing Dawn consciousness. It is not simply the aspect of prayer here that is a matrix for rehabilitation. Persons with disabilities and their caregivers have prayed a lot, and their success has not been noteworthy. Dawn consciousness is perhaps a sort of diffuse or diluted prayer.
IV. A SKETCH OF AN INTERVENTION
Here is an application of the foregoing theory framed as a response to the plea: "Please give me back my personality!":
"Where do you feel the hurt? That's the place of the abyss where your personality is buried beneath the plaques and tangles. (You don't have to believe this story--just try it on.) Creep to the edge of the abyss and look down. What do you see and what do you feel? Describe it or paint it. Commit yourself to continue this meditation daily unless special circumstances intervene or unless you make an intellectual judgment that this project is not worthwhile.
"At other times of the day expose yourself to stimuli that recall memories of when you were most alive. For example, music that invites "remembrance of things past," of romantic times when you were full of dreams.
"This project can be expected to be sometimes emotionally uncomfortable, but not miserably painful. Analogously to yoga, one should respect one's limits and be prepared to back off from pain and take care of oneself.
"The meditation and the music are like the rain and sunlight which fall upon the soil covering the seed of personality. And hopefully one day a little sprout will appear. A little impulse or intimation which points to do what to do or how to live, and when you look at it there will be a feeling of 'yes.' And you can continue to cultivate the garden of your personality."
V. MY PERSONAL EXPERIENCE
Having presented a context, I can now describe the meditative experience which was a prelude to my personality-rehabilitation through music. I was using Jon Kabat-Zinn's "body-scan" meditation tape (the meditation is described in his _Full Catastrophe Living_ (1990), where ordering information for the tape is provided). One lies down in a comfortable place and position and for 45 minutes attends to one's breathing and slowly scans the feelings in the regions of one's body, starting with the left big toe, but working up to larger regions. The meditation concludes with awareness of the body as a whole. Particular attention is given to the feelings and tensions in the face. This exercise made me aware that my face had been chronically tense since around the time of my diagnosis. That led me to the consciousness that in social interaction my face had generally become a mask, even with my therapist. "What is my real face?" I asked myself. I had no idea. (I think I recalled the Zen koan, "What was your original face before you were born?") My face, I saw, had disappeared into the Void where Sacks' leg was.
Later, in listening to meaningful music, as I wrote above, I heard it again in the normal way rather than in the self-alienated way typical of brain-dysfunctional persons, and I felt a confidence that I could continue to respond to music normally. My face had regained its freedom, rather than being reactive or a mask.
I will call sequences such as Sacks and I experienced "Genesis" experiences, where the evolution of Dawn consciousness is followed by an awakening of personal wholeness The archetype is the Biblical narrative: "the earth ... unformed and void, with darkness over the surface of the deep and a wind from God sweeping over the water-- God said, 'Let there be light'; and there was light. God saw that the light was good." A musical depiction is Haydn's Oratorio, "The Creation."
VI. PERSONALITY-HABILITATION OF SEVERELY IMPAIRED PERSONS
The next challenge is the personality-habilitation of persons with severe cognitive impairments who are currently incapable of understanding the foregoing method or maintaining enough disciplined attention to implement it.
The evident temporary response to music in even severely impaired persons has been widely noted. The locus of difficulty for my holistic intervention is the induction of Dawn consciousness.. I have argued, though, that this state is commonplace in the normal infant and in the adult empathizing with the infant (even though it is not explicitly recognized or labeled). Dawn consciousness is neither cognitively demanding nor esoteric (despite the difficulty of explicating it). What's difficult is inducing Dawn consciousness when it doesn't occur spontaneously. I think, however, that a caregiver who acquires Dawn consciousness and maintains it despite lack of reinforcement can induce it in a loved one by patiently reinforcing hints of its spontaneous emergence.
Dawn consciousness is a species of Hope, normal and unremarkable in normal children and in caregivers of normal children. If a caregiver can maintain this Hope in interacting with a disabled child, in the absence of reinforcement, it can induce a reciprocal state in the child which will be a matrix for growth through play. This, however, is difficult.
My idea may appear simplistic. I am saying that if a parent who pleasantly and comfortably plays with a normal child could turn to a disabled sibling and maintain, in an important respect, the same attitude it could induce a breakthrough (not a dramatic breakthrough, but the beginnings of a remarkable flourishing of personality which would organize cognition and behavior). I am maintaining that there is an unconscious difference in attitudes despite or because the parent loves the children equally, and he hopes for them equally. But for one, unconsciously, he feels hope for personality unfoldment while for the other only improved social adjustment. (How could he be unconscious of this difference? Just because he does love them both equally, and in comparison with the value of his love the difference is a nuance which can be overlooked.)
Kierkegaard wrote in _The Sickness unto Death_ about unconscious despair. Despair can be unconscious because it is dissociated or disattended to. If a person wears the mask of dementia or developmental disability, unconsciousness despair is induced in the onlooker, which is fed back to the afflicted one.
Genesis interventions supplement and do not interfere with normal caregiving which is concerned for comfort, behavior management, social skills, pleasurable stimulation, etc. Thus my proposed innovation does not involve risk or discomfort for the disabled person. It strangely, however, involves emotional risk and discomfort for the caregiver. How hope against hope, without irrational beliefs or destructive expectations?
I will proceed to discuss the interpersonal difficulties pertinent to Genesis interventions in the context of dementia. Hopefully, solutions can be extended to interventions for disabled children. Cohen and Eisdorfer (2001) indicate how a dementia caregiver's discomfort is normally (and I would say, mistakenly) handled in accordance with currents standards of care: "The enormous commitment involved in caring for an individual with progressive dementia requires that you develop a special relationship with the patient. You must understand and deal with his her or needs as well as yours in a way that does not emotionally, physically, and financially bankrupt you and the rest of the family. The process of evolving a special helping relationship has a technical name--approximation. _Approximation_ is the process of forging a flexible or changeable relationship in which the caregiver must continually make decisions balancing the patient's needs with his or her own.... Approximation is not easy to achieve or to maintain, but you can learn to do it. Regardless of your personality, professional training, or background it is hard to be close to the patient for long periods without feeling upset or uncomfortable. Learning how to distance yourself--not to avoid the patient or be insensitive, but to separate yourself on the basis of your knowledge of the patient's needs and your own--is helpful."
Suppose we were dealing with paraplegics rather than brain-dysfunctional persons, and the standard professional admonition to families was: "Regardless of your personality, professional training, or background it is hard to be close to a person in a wheelchair for long periods without feeling upset or uncomfortable." There would be an enormous problem with the culture of intervention. And it would be unlikely that there would be any easy solution.
I believe that change is possible. Persons with dementia or developmental disability are stigmatized as women used to be. They are considered, in general, as biologically incapable of governing their lives by reason. But if disabled persons are respected as individuals with dignified personalities, it is propitious for their personal growth. Whereas stereotyping, even if unconscious and with kindly intentions, tends to act as a self-fulfilling prophecy.
The foregoing adumbrates the emotional difficulties Genesis interventions present to caregivers or when self-administered by mildly disabled persons, even though they are not risky or distressing for severely disabled persons. Thus it can be expected that there will be resistance to their adoption, beyond the usual resistance to innovation. Mildly disabled persons can pioneer the exploration of the efficacy of and the difficulties of Genesis interventions. Their experience, if successful, should be helpful in reducing the distress to caregivers of severely impaired persons.
D.Cohen and C. Eisdorfer, _The Loss of Self_, Norton: New York, 2001.
C. Henderson, _Partial View_, Southern Methodist University Press: Dallas, 1998.
J. Kabat-Zinn, _Full Catastrophe Living_, Dell: New York, 1990.
J. Killick, _Please give me back my personality!_, Dementia Services Development Centre, Stirling.
O. Sacks, _A Leg to Stand On_, Simon & Schuster: New York, 1984.
_______, "Music and the Brain," in C. Tomaino (ed.), _Clinical Applications of Music in Neurologic Rehabilitation_, MMB Music: St. Louis, 1998.My homepage