ESSAY
Alzheimer’s: More as Metaphor Than as Memory
An Essay on Identity
By Deborah Emin
What do we do when everything in our culture has led us to believe that our identity is determined by our memories? When from an early age we are taught that we must remember persons and events; that we must memorize our phone numbers, addresses, the color of our eyes, our height and weight, because all this enumeration of our beings (along with Social Security numbers, passwords, and PINs) constitutes the lives we are meant to live. In addition, our ability to remember all of this information is what determines both our acceptance and status in the world. When we are no longer able to remember the date of our birth or who is president of the United States, we are in essence escorted out of the house of the living, and into the world of the newly damned. We are then assigned the designation that most of us who are 50 or older fear the most—sufferers of Alzheimer’s.
It is the newest scourge. The shame of it, the horror of it, strikes fear in us all. For it is our memory that we have somehow all agreed is the sine qua non in determining our fitness to participate in this world. Listen closely these days to novelists and physicians and you will hear the drumbeat of the primacy of memory over all other aspects of our being; that without a memory we will no longer be accepted in the community. We will be banished to another realm, a place where we will and must be cared for by strangers and live with strangers because it won’t matter to us; we will have lost our identity.
I won’t deny that I occasionally find it frightening to think about what it would be like to have my memory erased. I am inordinately proud of my memory. The thought of having it scrambled or altered in ways over which I have little or no control can wake me from time to time in a sweat; then I am filled with questions about what I would do and how I would learn to deal with it.
Learning to accept most of the common aches and pains associated with aging, watching the suppleness of my skin change, hearing how my voice’s timbre has deepened, and learning to adapt to the new muscle tenderness after exercising is a lot of change to deal with and accept. Much of what I thought of as being the “me” of my identity is in constant flux now, owing to the fact that the aging process finds its own paths. Whether it pleases me matters little, and I have not been asked in any case. I think people moving through their 50s and 60s realize at some point that, while there is a certain exhilaration about newfound strengths (in my case, finding myself more self-assured, poised, and positive about life), the ones we have lost are greatly missed. Compensating for them is a new art form that takes considerable inventiveness.
The new question that has settled in and that will keep me company for a long time now is this: Would I have the strength of character to go on functioning if the one faculty I have always counted on – my memory – disappeared? Who or what am I without my memory?
If I found myself struggling with the language in such a way that even the most mundane question, asking someone to pass the salt, was lost to me, would I be lost as well? Or would the loss occur only for those who know me and with whom there has been a connection based on shared experiences? If we could no longer start many of our conversations with the words: “Remember when . . .” And if that question were met with my blank stare or my answer was “No, I don’t recall,” would that mean that I no longer cared about the memory, or the friend, or the I that was no longer I?
What I chose to discuss in this essay is not just this basic and pervasive fear of Alzheimer’s and how it relates to one’s identity, but also how those related issues are expressed in our culture. I think it is always useful to look outside ourselves for the representations of the issues we are struggling to understand, so that in the process we can gain some distance and with that distance a little reassurance that we are not alone and that there are solutions we may not have contemplated.
For me, the questions became interesting when I considered them in the light of how an artist might represent the actual experience of losing someone they loved to Alzheimer’s. That took me to a viewing of the film Iris, in which the celebrated writer Iris Murdoch (played by Judi Dench) is stricken with Alzheimer’s. Along with her brilliant husband, John Bayley (Jim Broadbent), we watch as her condition deteriorates, while he is awash in memories of what their life had been like. I found, to my surprise, that I disliked the film immensely. That comment would most likely fill an entirely different article. Suffice to say there was not much in the way of hope or moving toward a greater understanding of what Alzheimer’s is, what this kind of erratic and altered behavior can mean, and what it could lead to.
On the contrary, Iris felt more like a journalistic retelling of a story that we all basically know. Without any attempt whatsoever to show something new in the way of how, for example, the idea of Alzheimer’s separate could lead to a different perspective, the film left me merely feeling sad for what happened to Iris Murdoch. But it would have left me feeling that way about anyone. As an antidote to my anxiety, it was most unsuccessful. I wanted some kind of experience before me on the screen that offered some insight about what we can do when the identity of the beloved has changed. What do we, the people who knew them when, do now?
Then, through fortuitous circumstances, I read the play The Subject Tonight is Love, by Sandra Deer. A theatre in Birmingham, Alabama, was putting it on and I was asked to help write some publicity. I never saw a production of it, but I did speak with Sandra Deer about her play after having read it. At first I’d been struck only by the severe rupture between the mother and daughter, but then the drama became a much deeper representation of the ways in which parents and children deal with end-of-life problems when there has been bad blood between them. On top of that, it explores some difficulties that can arise when a parent no longer has the identity she once possessed, because of Alzheimer’s.
The Subject Tonight Is Love is not about Alzheimer’s per se but more, in Sandra Deer’s words, “about healing the wounds between generations. And Alzheimer’s is the catalyst for that. At the same time, you can see very clearly what Alzheimer’s is like.”
Ms. Deer went on to tell me that the reason she decided to write it had to do with a friend of hers who specialized in elder care. The friend knew Ms. Deer’s mother (who had had Alzheimer’s) and was aware of the ways in which Ms. Deer and her mother had not got along. She realized that Ms. Deer was the perfect person to write a play about Alzheimer’s. As Ms. Deer and I discussed both the play and the writing of it, she described what it was like to relive the experiences of her mother’s twilight moments, having found the mother she would have almost wanted, and crying as she wrote those scenes.
It is this kind of experience – the ability of the writer to describe and create a different kind of truthfulness about what such loss is like – that interested me. The play may not be hinged directly on the actual events of Ms. Deer’s relationship to her mother (a la John Bayley’s relationship to Iris Murdoch), but the reformulation and invention mirrors an experience toward the end of her mother’s life when a certain rapprochement was gained. In the play we see what it must be like for the daughter, Diana, to see a mother she would have liked. Yet that moment of finding her and losing her again is over very quickly. After a lifetime of emotional estrangement, Diana is able to say about her mother: “She was a good person. My mother knew how to do things. She was a smart person before. She was funny. I want the person I almost knew.” Throughout the play, Diana is mystified as to why she and her mother were never particularly close. But by the end, what is clear is that transformations are possible even if they are glimpsed only for a moment. When the mother, Ruby, sinks even farther away, Diana is able to say, “But through it all, somewhere on a shore we stood, Ruby and Diana, watching all that. She was smiling, so I knew not to be afraid. . . . She was furious and hateful, racist and bitter, morose as a pit of mud. But still the smile. Somewhere on a shore, watching ourselves. The smile held.”
Representation is not an exact science. The ways in which we assume identities in life is not either. We approximate what we would like to be, and we attempt to be as consistently ourselves as possible. Breakdowns in our identities are commonplace, frequent, and disturbing. There is in each of us a need to find something that will help us get through the day, through our lives, give us some kind of help. In his fine new film Assisted Living, Elliot Greenbaum treats us to a different set of perspectives on this question of Alzheimer’s and identity.
What intrigues me most about Mr. Greenebaum’s film is the way in which he imagines the loss of identity and sees how we all, no matter what phase of life we are in, need to find some help for ourselves, whether it is a crutch or a belief or the casual toke of a joint. We all need some kind of assistance to keep going and to stay alive.
In his film, the protagonist, Todd (Michael Bonsignore), is a slacker, an angry guy who would rather be doing anything other than what he is doing—working at a home for the elderly where most of the residents suffer from Alzheimer’s. Todd is lost, plays a sort of Jack-of-all-trades role in the institution, never feels comfortable, but does at times offer some help and relief to those who live there.
As in all quests, the seeker meets someone along the way who offers him a path to find what he is looking for. The stranger is Mrs. Pearlman (Maggie Riley), an elderly woman who is sinking into Alzheimer’s moments that become progressively worse. At first she is a bother, just another patient who is not able to take care of herself and who makes demands on him. Yet there is something different that goes on between the two of them.
Todd impersonates Mrs. Pearlman's son on the phone, just as he has impersonated God to the other patients to tell them what heaven is like. But while the other patients are calmed down, Mrs. Pearlman gets worse. For the first time, Todd realizes that there are consequences to his actions, and that Mrs. Pearlman's breakdown is his fault. He wants to help her, and to change himself as well.
Just as in Sandra Deer’s play, Elliot Greenebaum’s film explores a disrupted relationship between a mother and (in this case) son. Throughout the film we never see the son, but we see Todd assume his role and then find his own role with Mrs. Pearlman as she begins to lose track of who Todd actually is. The important thing is that she is able to allow him to connect to her.
What is intriguing is how this very young filmmaker, Elliot Greenebaum (now 27), is not looking to represent the facts or his personal experience, or his own feelings about Alzheimer’s. Rather, he is able to imagine it, to inhabit it, almost as an article of faith. There is something radically different about Greenebaum’s conception of Alzheimer’s. His vision of it not fearful or humiliating; instead he presents it as a kind of inevitability.
There is something comforting about this idea. If we are all in some way or another going to suffer from Alzheimer’s directly or through the excruciating loss of a loved one as he or she used to be, then maybe we are all preparing for a time when memory may not be the sine qua non of our status as human beings. Maybe we all need to accept that a time might come when it will be necessary to find some form of validation other than memory. And there are other aspects of the aging process that we don’t know a thing about yet, that have nothing to do with our memories, and that we might do well to explore.
At the end of the film we watch Todd find his assistance coming not *from marijuana but from his visits with Mrs. Pearlman who is now much deeper into a twilight of faded out memory.
We know so little, actually, about this thing we call memory, and yet we all talk about it and worry about it as if it were something we could control. How many times have I caught myself worrying because a word I had known two days ago was no longer on the tip of my tongue? Yet am I doing myself a disservice by equating memory with identity?
Identity is a matter of some consequence, as is memory. But the ways in which life manifests itself are so much more complicated – and most certainly, aging is more complicated and more mysterious than most of us have yet begun to grapple with. I think it is probably prudent not to look exclusively to science for the answers to these questions, but also to explore the books about to be written and those plays and films in development that will imagine what it is like to be without a memory and yet still be.
