Writing on my laptop after a late breakfast. Carol is dozing on the sofa.
In a unique way, as only Kafka can do, his “The Metamorphosis” explores the question of a person’s identity.
Its first sentence announces without preparation or fanfare that Gregor Samsor one day wakes up in the form of a giant beetle. Within this form his brain is still human. He awakens from “troubling dreams” in his new shape, but his mind is fixed on his getting ready for work as a traveling salesperson. He must, as usual, catch his train.
Thus the story starts. It proceeds from there with Gregor retaining his human brain while his family figures out how to deal with his transformation. Their question, no doubt, is whether they should consider that physical being Gregor. If not, what?
Read the story here if you want to see what Kafka does with it. His concerns in writing it are far different from mine are in putting it into this context. I do that only because it is an exact negative image of my situation where Carol’s body, except for some weight loss is exactly as it was while her brain, and therefore her sense of herself and her surroundings are not.
The question raised by the story that I find so apt is what we mean when we say, pointing at a person, “This is Joe or Jane Smith.” Do we mean the physical presence we are looking at? Surely, that seems right. But what if the person with that name no longer knows who he or she is? Or perhaps more to the immediate point, what if this person doesn’t know who you are? Or where he or she is? Or what year it is? What if, in fact, this person’s grasp of the here and now is largely gone.
If the person’s grasp of the here and now is entirely gone, if the person is living in an evanescent present moment that disappears from memory as soon as the moment passes, then it is somewhat easier to begin to think that the person’s identity has been compromised because for a person to have an identity we usually assume that some self-awareness as well as some relationship to the external world is necessary.
The question in that sense goes in both directions. Who is the person within the body of my wife? What is my relationship to her? And from an egocentric point of view that question might even be more compelling. Am I still her husband, or am I just another caregiver, albeit one who is her most constant companion?
Who is this other person living with me in our house? Is it even right to say “our” house? I don’t think that is begging the question.
It is the question.
Clearly, there is a legal answer to this question. This person is the woman I met thirty-five years ago in Suffolk County on Long Island, NY, who added my last name to hers when we married four years later, and with whom we have had a daughter now living in Minnesota. The clarity of the legal point is buttressed by the fact that I have begun acting on her behalf based on the power of attorney document she signed fifteen years ago when nothing like the present situation seemed remotely in view, signed just as a precaution against that faint possibility, which has now become our everyday reality.
So, the legal answer to the question is immediately clear as far as it goes. But it doesn’t go nearly far enough.
As if to underscore that point, Carol frequently says in a most plaintiff way that she wants to go “home,” which I take to mean that place her memory remembers, not the physical structure we together bought almost sixteen years ago, the title for which bears both our names, and in which we have cohabited until the present moment. The fact that this house bears the unmistakable imprint of my wife’s tastes and interests is palpably obvious to me or anybody who knows me. Left to my own devices the décor would be decidedly different. The fact that she no longer recognizes all the touches she added only underscores the maddening pain her disease inflicts.
Even more troubling on an emotional level for me is that she most definitely knows my name. She calls out “Steve” whenever she is frightened, or troubled, or just want to talk. But it is not at all certain that she associates that name, so firmly fixed in her memory, with my actual physical presence. I often sense she is disappointed when I show up in response to her summons.
As though she were expecting somebody else.
I am some kind of presence in Carol’s life, one that probably does not come into clear focus in the haze of her flawed perception of the here and now. On the other hand, the Steve of her long-term memory is still sharply etched
I recognize this disparity between memory and immediate reality. But emotionally, I received it as a knife twisting into my heart. How could she be so indifferent to my feelings of loss, even of betrayal when she fails to acknowledge me as her husband of more than thirty years? Of course, that is an absurd complaint on my part. But it is genuine nonetheless.
Motorcycles just thundered by on Center Road, as they often do on this Peninsula. I check Words With Friends to see if my niece or grandson have made a move. Neither has. I remember today is Yom Kippor. Unlikely either would be playing today. As a largely non-observant, secular Jew, living in an overwhelmingly Christian place, it is easy for me to forget this most important Jewish holy day. Especially since I no doubt have a lot to atone for.
A genuine but absurd complaint. As ridiculous, in its way, as Gregor Samsor, now a giant dung beetle, wanting to pick up his case of samples and catch his usual train. Dealing with this dread disease puts you in the world of the absurd where there are no answers. I suppose you could say that the one answer to a caregiver like me is to acknowledge that my job is palliative care, to make life as comfortable as possible for the patient.
That is all well and good. But there does not seem to be palliative care for the caregiver.