Living with Alzheimer's: Body, Soul and the Remembering Community
by Stephen Sapp
Stephen Sapp is associate professor of religious studies at the University of Miami in Miami, Florida. This article is excerpted from God Never Forgets: Faith, Hope and Alzheimer's Disease, edited by Donald K. McKim, from Westminster John Knox. This article appeared in The Christian Century, January 21, 1998, pp. 54-60. Copyright by The Christian Century Foundation, used by permission. Current articles and subscription information can be found at www.christiancentury.org. This article was prepared for Religion Online by Harry W. and Grace C. Adams.
The way people deal with Alzheimer's disease is greatly influenced not only by theological beliefs but also by the nature of this particular illness, an illness that the late medical essayist Lewis Thomas in 1981 labeled the "disease of the century." One should not downplay the horrors associated with any illness. But Alzheimer's and other dementias are particularly pernicious.
Many illnesses deprive a person only of the present: one becomes ill, feels more or less miserable depending upon the nature and severity of the illness, seeks treatment, and recovers after a relatively brief period of time, suffering the loss only of that time when he or she was actually ill. Other incurable illnesses take away not only a person's present but also the future by prematurely ending the individual's life. Alzheimer's disease, however, robs the sufferer not only of the present and the future but also of the past as all memory of prior events, relationships and persons slips away.
Clearly, then, the concepts of time, memory and history are central in any theological consideration of this illness and its impact on those it touches. In contrast to the Eastern religions, which affirm the existence of an eternal world distinct from and even in opposition to the world of time, the Western religious tradition is based on the belief that the eternal has actively intervened in time. These interventions constitute a sacred history, the history of the mirabilia Dei, the "marvelous deeds of God," which lie at the heart of the faith that Christians affirm.
The prospect of losing memory, of no longer being able to recall this sacred history, creates a significant problem for such a belief system. Oliver Sacks, in The Man Who Mistook His Wife for a Hat, quotes film maker Luis Buñuel's remarks on memory. Although he is speaking in a purely personal vein, Buñuel could just as well be reflecting the classical Western religious tradition:
You have to begin to lose your memory, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all. . . . Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.
Are human beings really nothing without memory? Or is there perhaps something more? Sacks later quotes a letter from A. R. Luria, a researcher famous for his work with amnesia patients.
But [human beings] do not consist of memory alone. [They have] feeling, will, sensibilities, moral being -- matters of which neuropsychology cannot speak. And it is here, beyond the realm of impersonal psychology, that you may find ways to touch [them], and change [them]. . . . Neuropsychologically, there is little or nothing you can do; but in the realm of the Individual, there may be much you can do.
If modern scientific medicine cannot speak on this matter, the question necessarily arises: How can the Western religious tradition help guide people through what many persons with Alzheimer's disease and their caregivers experience as, if not a dark night of the soul, a dark night of the mind?
St. Augustine refers to human beings as terra animata, that is, "animated earth." (I am indebted here and for a number of points that follow to Gilbert Meilaender's essay Terra es aninia: On Having a Life," Hasting Center Report 23 [July-August 1993].) This reference may surprise those who cannot see Augustine as anything other than the source par excellence within the Christian tradition of a Manichaean, Neoplatonic dualism that denigrates the importance of the physical body in favor of the soul. Augustine's language, however, should not come as a surprise to anyone who knows the Adam and Eve story, the second account of creation in Genesis 2, with which Augustine was clearly very familiar. (It serves as the basis for his interpretation of human sexuality--though what he did with the story in that regard is lamentable).
In fact, Augustine's discussion of this critical section of the Bible is the context in which he uses the phrase terra animata:
"To earth you will go" [Gen. 3:19] means, we may be sure, "On losing your life you will go back to what you were before you received life," that is, "when the breath of life has left you will be what you were before you received that breath (for, as we know, it was into a face of earth that God "breathed the breath of life" when "man was made a living soul"). It is tantamount to saying, "You are animated earth, which you were not before: you will be inanimate earth, as you were before."
What does it mean that when God created the human race the procedure of choice was the forcing of God's breath into a body fashioned from the earth?
Most fundamentally, it appears that the "breath of life" (in Hebrew, nishmathayyim) that God breathes into the man (ha-'adam) cannot be equated with the mind, the cognitive faculties, rationality, self-awareness or anything of the kind. Rather, it is exactly what the Hebrew says it is, the "force of life," vitality, the animating principle that turns what previously was simply terra, a lump of clay, into terra animata, living, breathing, animated flesh.
Only after the inspiration of this life force does the creature that God has fashioned from the earth become a "living being" -- a description, not incidentally, that is shared with the "creeping things" of Genesis 1:20 and the animals and birds of Genesis 2:19 and 9:15-16 that God creates in much the same fashion. It is clear from this common terminology that it is not human reason or cognitive capacity that constitutes the endowment from God that gives humans life and makes them more than mere bits of dirt.
Second, the later course of this idea in the Hebrew scriptures suggests that the living being that a human becomes through God's gift of the life force ceases to exist only when that person dies in the conventional understanding of the word, not when the person loses self-consciousness or the ability to make rational decisions. For example, in Genesis 35:18, Rachel's death is described this way: "As her life-force was departing (for she died). . ." (author's translation). Whatever God gives to humans that makes them living beings continues with them until they actually die, not merely until they lose their cognitive faculties.
This story of human creation as terra animata reflects and probably underlies the biblical view of human nature itself, a view that is quite helpful in dealing with the issues that Alzheimer's disease raises. Although the Hebrew scriptures use such terms as "flesh" and "spirit" ("body" and "soul"), they do not depict these as separate substances that only coincidentally or unfortunately cohere. This is the view most people today tend to assume when they hear such terms, and it is based on Greek ideas that have infiltrated Western culture. Rather, in the biblical view these two terms describe interdependent elements that together make up the human being, both of which are necessary for human existence.
The late Paul Ramsey put it well when he wrote that the human being "is an embodied person in such a way that he is in important respects his body. He is the body of his soul no less than he is the soul (mind, will) of his body." Instead of considering the soul (or will or personality) to be the "real" person, and the body to be something almost incidental that the person "has," it is more accurate according to the biblical understanding to say that human beings are bodies, that they are both animated, "ensouled" bodies and incarnate, "enfleshed" souls.
Thus the mental and physical activities of the individual are merely different manifestations of the same underlying "living being." The person does not have a body that is somehow fundamentally different from and even alien to the soul that exists within it, as if the "person" were more elemental, a distinct existent that is a possessor of the body. Rather the person is a body that is alive, animated by the life force that comes from God. In short, the "person" does not exist apart from the body, which is the outward manifestation of the total reality that includes it. (To get a feel for the point being made here, ask yourself, "Exactly what is it that I really mean when I use the word 'I'?")
In the original Hebrew understanding, then, the body cannot be seen as a prison from which the soul struggles to escape: a person simply perishes if body and soul are separated because what is usually thought of today as the soul is really just the principle of life itself -- that which makes the body alive. So inextricably are they united that when the life force departs, the body dies and nothing is left as a separate entity to pass on to another existence.
Christians of course believe that something does go on living after this life is over, but it is important to note exactly what it is that Christians affirm in this regard -- not the "immortality of the soul" (a rather Greek notion) but the "resurrection of the body" (a very Hebraic concept).
Why is this significant? If body and soul are inextricably linked to make up the human person, then the only eternal life possible must be as a body because there simply is no such thing as an independent soul that can exist disembodied. Embodiedness is essential to who human beings are because it is only as bodies that they exist. Attempting to describe exactly what that resurrection body will be like can be nothing but idle speculation -- no one can possibly know--but Christians do affirm that eternal existence with God will be in some kind of bodily form, not as ethereal spirits (see 1 Corinthians 15 for Paul's struggle with this issue).
What happened to this rather simple, straightforward biblical understanding of human nature? The main dismantler of this understanding was the philosopher René Descartes. He proposed that all reality is divided into two realms: res extensa, the world of bodies characterized by extension and rigid adherence to precise mathematical laws, and res cogitans, the world of unextended, thinking, spiritual substance that is independent of the first realm. Because living bodies are extended, they must be part of the res extensa. Animals are in fact machines or automata, totally determined by physical laws, and the same judgment applies to human bodies, at least insofar as those bodies function largely automatically and without conscious attention.
Descartes arrived at his dualistic view of reality via the method of universal doubt, in which the only thing unable to be doubted is the doubting self (hence his famous dictum, Cognito, ergo sum -- " I think, therefore I am" -- an identification of disembodied thought with "real" existence). This approach led to a dualistic view of human beings: the individual is composed of two substances, an extended machine for a body and an independent, unextended mind. One can easily guess which realm came to be seen as more important -- in fact, the only valuable realm.
If the body is regarded simply as a machine (even an amazingly complex one), it is proper for the scientific mind to observe it only from without, especially since Cartesian dualism suggests there is an unbridgeable gap between the observing mind and the observed matter. Thus today when minds observe a human "machine" that lacks the traits that such minds recognize as akin to themselves -- rationality, cognition, self-directed will -- and when those minds are predisposed to think the only valuable part of the person is precisely that which has been lost, it is not hard in the Cartesian scheme to take the next step and deny humanity to such an entity.
What is really at issue, then, is the question of what constitutes the person, the individual self. Meilaender observes that the prevailing dualistic view has entailed two questionable assumptions. The first is that humans exist in some kind of timeless, disembodied form that is the "real self," an essential "I" somehow separate from the body and all the experiences that that body provides. The second assumption is that there is one particular time in each persons life when "I am really I," a period toward which all that has gone before has pointed and after which all that follows is somehow less than the essential "I ," even to the point that that "I" actually is lost.
The problem with this understanding of personhood is that it separates the "person" from the biological nature or embodied self that is the only locus and vehicle for the personal history that constitutes living. It is interesting that an age that claims to have moved beyond metaphysics, that is almost universally characterized as materialistic and historical, has arrived at a concept of the person that is thoroughly divorced from both the material body and the history of that individual's life.
Indeed, it is rather ironic that a society that prides itself on its reliance on scientific method, that grounds its approach to truth in a reductionistic view that claims the only objective reality is the material, that has rejected the notion of timeless Truth in favor of relativity in nearly every aspect of human life one can imagine -- that such a society in effect disregards the material and historical (in this case human bodies and the events they have experienced that make up people's personal histories) in favor of some immaterial, essentialist notion of personhood. As Meilaender observes, "How wrong we would be to suppose that ours is a materialistic age, when everything we hold central to our person is separated from the animated earth that is the body."
Of course, human beings are not just bodies, but they are assuredly and undeniably that. Indeed, it may even be argued that the body is the most important of the aspects of personhood, at least as far as earthly life is concerned. That is, if a person's body is destroyed (or its vitality lost), no one would claim that that being is still a human person in the sense in which that term is normally used, that is, to denote someone who is automatically considered to possess a special value that cannot be wantonly violated, a being worthy of protection from harm, and so forth. To use a rather graphic illustration: few would claim that stabbing a corpse constitutes murder (though the case argued above is supported by the fact that even after the vitality of the body is lost, even after the "person" is clearly gone, the body still retains enough importance even in contemporary thought to generate the widespread feeling that it should be treated with respect -- witness the deep concern about recovering and identifying the bodies of victims of air crashes).
On the other hand, if that same person were to retain bodily integrity and vitality but to lose consciousness, rationality and the capacity to make autonomous choices, most people would simply take the commonsense position that of course this is still a human being even if some or even most of these capacities have been lost (though some people are beginning to argue there is no longer a human person at stake). Serious questions, not to mention criminal charges, would be directed toward the knife wielder.
Indeed, if memory is so important, one has to ask where those memories came from in the first place. And the answer is unarguable: they came from experiences that the person has had in and through his or her body. The body is the only avenue human beings have for interacting with the world and other people, and thus for creating memories and a personal history. Is it not curious that many people today are so quick to disregard this fact and to consider the "person" to be lost when the memories are lost, with no regard for the value of the organism that permitted those memories to be made in the first place or for the importance of that organism's ongoing personal history?
Quite instructive in this regard is a central doctrine that most Christians affirm every Sunday and that was part of Jewish belief in Jesus' day, namely, the "resurrection of the body." This idea, whatever one believes it to mean, is a ringing affirmation of the position just articulated. If the condition in which the believer is going to spend eternity with God is in some way embodied (though not necessarily in a physical body as experienced in this life), it is hard to imagine a stronger statement of the importance of this aspect of human nature.
If the body is important enough to be resurrected in some form for eternity, to be the apparently essential vehicle for that eternal relationship with the divine that lies at the heart of the Christian promise, it ought to be seen as fairly significant in this life. Because of the deeply rooted dualism described earlier, however, to the extent moderns believe in eternal life they seem much more comfortable with the idea of a disembodied immortal soul than a resurrected eternal body.
Whether that preference makes more sense or whether it is easier to conceive and to explain how such a thing might be, it certainly cannot be seen as more in line with the teachings of the basic documents of the Christian faith. Neither, incidentally, as Reinhold Niebuhr once pointed out, is there any more empirical evidence for it than there is for some kind of bodily resurrection.
The doctrine of the incarnation, the affirmation that in the human being Jesus, God is in some mysterious way directly present on earth, is the demonstration par excellence of the value of the body as an essential part of who human beings are. Though God could (and did) communicate with human beings in other ways, "when the fullness of time had come" God chose to assume human form -- to become embodied -- in order to redeem humankind. And it was quite important to the early church to make clear to all that this Jesus was "fully human," not just the "real" Spirit-God seeming to inhabit a body. When this view is taken together with the doctrines of creation and resurrection of the body, it is reasonable to conclude that even when rational function is lost, God may still value the human body enough to stay in some kind of relationship to it.
Perhaps Augustine's view of the terra animata, which is really just another expression of the biblical view of the human person as a psychophysical unity, is a more accurate reflection of the reality that human beings both experience in themselves and observe in others. The "I" is really the sum total of one's experiences, the natural history of a life, however long or short, that can be lived on this earth only in and through the body, in both its growth and its decline. Each human life consists of a story that began before that person was aware of it and therefore presumably can continue after he or she again ceases to be aware of it.
As Meilaender points out, even after a person ceases to be aware of her life story, that story continues physically -- in the body's ongoing ingestion and utilization of nourishment, in its struggles against injury and infection, and simply in the ongoing presence of the body that has always been the location of the "I" that loved ones and friends have known. It continues interpersonally in their ongoing interactions with the person, if only as his or her caregivers and even if his or her contributions to the relationship are limited or have ceased altogether. And it continues socially because that person does still occupy a place in the community, however limited (to put it crassly, someone's survivors cannot collect on life insurance or distribute the estate just because the person has lost his or her cognitive capacity). Thus even when one's rational capacities fade or fail completely, the "I" that consists of much more than those capacities continues to exist -- diminished, to be sure, but still worthy of the dignity and respect due to all those who are created in God's own image.
When one sees the word "memory" in connection with Alzheimer's disease, the obvious (and correct) assumption is that the patient's memory is at issue. After all, one of the worst aspects of this illness (many would say the worst) is that it robs its victims of their memory and thus raises the tough questions that have been explored here concerning personal identity and even personhood. So it is clearly appropriate to have concentrated up to this point on the impact of Alzheimer's disease on the individual.
But it is not just the memory of the person with Alzheimer's that matters. Throughout the history of the "peoples of the book," the collective memory of the community has been central to believers' self-understanding. Indeed, in certain periods this memory was probably more important than any sense of individual identity. In Christianity the central sacrament is precisely a collective remembrance of the life (and death) of one individual; in Judaism the key rite is a similar community recollection of the formative event for the covenant people, the Passover preceding the exodus.
It's appropriate to conclude with a brief consideration of the guidance that might come from a more corporate understanding of the word "memory" for dealing with those individuals who may be losing (or have already lost) theirs. It goes without saying that contemporary American society is very individualistic, almost certainly the most radically so in human history. At the heart of the American approach to life is the deeply held belief that each person is a discrete, self-sufficient monad whose greatest achievement is to "do one's own thing" according to the light of one's own reason (or often, it seems, one's emotions). This attitude is reflected, for example, in the fact that the key value for contemporary bioethics is "autonomy." Certainly one would not want to advocate the loss of individuality and autonomy--recent events in Eastern Europe and elsewhere seem to have demonstrated that human beings can have these values taken from them for only so long before they must demand them back. Nonetheless, many people today think the U.S. has gone too far in this regard.
Once again, a helpful corrective is to he found in the basic documents of the Christian faith, especially the Hebrew' scriptures. In ancient Israel, one of the reasons that the "elders" were so highly respected was that they were the depositories of the memories of the covenant people. The continued existence (or at least well-being) of the people depended on remembering that Yahweh had intervened in a unique way in history on their behalf and had given them certain responsibilities to fulfill. A particularly clear illustration is in Deuteronomy 32:7, when Moses takes the people of Israel to task for their faithlessness to the God who had been ever faithful to them: "Remember the days of old, consider the years long past; ask your father, and he will inform you; your elders, and they will tell you." Moses' emphasis is on the importance of the memories of the elders, who had lived long and experienced much (including frequently the "sacred history" itself). It is exactly these kinds of memories that are progressively lost in Alzheimer's disease.
Another responsibility of the elders, however, was to produce offspring and convey to them the memories of the people, which of course would then include the memory of those elders and their role in the history of the people. In short, if people today can overcome their sense of radical individualism enough to see themselves as truly part of the community then the community can not only remember them when they are no longer here but also can remember for them when they can not do so for themselves.
Caregivers can be not only givers of care but bestowers of a kind of immortality by recalling for others around them what the person with Alzheimer's disease no longer can recall in order to strengthen the remembering of that person and to keep his or her role in the story of the community alive in the corporate memory. In fact, many caregivers may miss out on an important opportunity in this regard. Because short-term memory seems to fade before long-term memory in those with dementia, many tend to recall and repeat stories and experiences from their distant past. The common reaction of caregivers is to get irritated and frustrated at hearing these "old stories" repeated. Perhaps those caring for the person should instead listen carefully to and even record these stories and learn from them. After all, many of the stories concern times when the caregivers were not around, and if they are allowed to be lost with the fading memory of the person with Alzheimer's disease, then that part of the family's and the broader community's history is gone forever.
In addition, caregivers need to record their own struggles, sufferings and triumphs, because those also are important parts of the history not only of the caregiver but also of the person being cared for. If they are lost, then that person is in a sense lost even more.
It is also possible to speak of God's memory in this light. Whether the individual remembers, or even when the community remembers for the individual, the Western religious tradition certainly affirms that God remembers. Some comfort, therefore, can be found in the fact that God's memory is unfailing, even if that of any given human being is defective or even totally lost. God never forgets.
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