Monday, July 11, 2016

The Changeling

It's a funny thing - we give ourselves a lot of credit for some specific personality traits. We think highly of people who exercise good judgement (whatever that means).

We are proud of our self-discipline, impressed by the ability to focus - and we assume that manners and  compassion and empathy are things we learn early in life and that they will  stay with us all of our lives. If anything, I have always assumed that with age, humans tend to become more compassionate as they navigate through the various changes in their lives. 

In my world view, being compassionate, being empathetic, learning to forgive others, and loving other people are traits I value above almost all else.  I can disagree with someone on almost everything, but if they are compassionate and empathetic and kind people - well then, they are "good" people.

So here I am, living closely with a man I love with all my heart - who used to have all of these traits in spades, and now does not. This very peculiar disease has really truly turned my entire world upside down in thinking about "character."  It turns out that once the right temporal lobe of your brain gets damaged enough, you are not able to "feel" the things that we consider such moral certainties.

In thinking about how to describe Alex, I am reminded of the book, "Outside Over There," that I read to Laura when she was little. If you don't know the story, it's about a big sister whose baby brother is stolen by goblins and replaced by an ice baby.  "So the goblins came. They pushed their way in and pulled baby out leaving another all made of ice. Poor Ida, never knowing, hugged the changeling and she murmured: 'How I love you.' The ice thing only dripped and stared, and Ida mad knew goblins had been there."

It is disturbing in ways I lack the power to describe. Emotional response has lost every trace of subtlety for Alex. It is not that he feels nothing - but only that the nuances are completely gone, and the ability to put himself in someone else's shoes no longer exists.

In all the  ways  I have been taught, Alex is no longer capable of being a "good" person. He will step on your foot, shove you out of the way, turn the lights out on you if you come up from the basement after him, take your place in line, pull the cat's tail, sneeze on your dinner, and not appreciate it if you do something really nice for him. He will eat all the cookies on a plate without ever considering sharing. If you look away for an instant, he will eat your cookies, too.

When people are shocked or irritated by his behavior, he takes on a funny look. In Alex's most recent medical notes, the doctor noted that Alex had a fixed affect that would best be described as "sardonic." (Since Alex has always had more than a bit of that going for him, some part of him might be pleased at that.) However, when someone has just taken food off your plate, and then looks at you sardonically when you get mad at him - well, let's just say it doesn't make you like him more.

But in the weirdest way, he is so unrelentingly easygoing about it all, that just as you are thinking about murdering him, you see something sort of holy about it. There is not a trace of malice in any of it. There is a kind of innocence in it - and every so often, it is hysterically funny. So we hug the ice baby, and he really does just stare (or maybe grimace), but what shows on his face is not a good measure of the person inside there.

He has lost his "filters." When he draws (and he draws often), the pictures are invariably rude and nude and totally inappropriate. He will draw them anywhere. On an airplane, he was busily drawing a woman with the most ENORMOUS knockers AND male genitalia, and the polite woman sitting next to him asked if she could take a look at his drawing. The look on her face....priceless.

By the way, if he is with a bunch of pre-schoolers, and has the opportunity to draw, he will do exactly the same thing. This can be hard to explain..

Our season tickets for the symphony are right at the front of the main floor of a hall that is famous for its amazing acoustics. I took him with me to see a performance of the Berg Violin Concerto a couple of months ago, and before it started, I told him that this was one of my favorite concertos. He listened restlessly for a while (the piece is challengingly dissonant) and then said loudly, "Why do you like this?" I shushed him, and wrote a note telling him he needed to whisper - but whispering is no longer possible. So I told him to draw a picture for me while he was listening,  and he drew a beautiful violin that morphed into a woman with big breasts.

Is he happy? I think so. I think he is not unhappy.

But I also think that all of his emotional responses are very blunted (except for fear and anxiety -which seem to have taken a firm hold on him). And for all of the philosophical talk about living in the moment - well, anticipating a good thing is a delightful  pleasure and it is one Alex no longer can experience. 

Is he still a good person?

There is an old Buddhist adage, "Good and bad are ways of not seeing." That's what I think. I think that if I worry about whether Alex is good or bad, I stop seeing the very real person in front of me. That person, with all of his oddities, needs my love and compassion and empathy even if he no longer knows he needs it.   And I humbly realize that my ability to feel these things is an incredible gift that could be stolen from me without much warning.

Carpe diem!


  1. "The changeling." A perfect metaphor, oh Brilliant and Compassionate One.

    I believe you deserve a "turn about is fair play" recording of Vanilla Ice on your voicemail, by the way ... Or Not.

    1. Can't help it. The Finland Song is just one of my favorites. I hope it gets stuck in your head, too!

  2. It is all such a puzzle, and one I have not yet sorted out in my head. You write so well about the changes, the loss of "filter" and with such deep love and understanding.

    My FIL was a respected professor, deacon in church, but he never had a very good filter. He was old-school sexist, liked to hold forth about himself and his accomplishments, and not much at listening, at least to women. He was my FIL, so I learned to deal with him, but never felt entirely comfortable in his presence. (Is he looking at my breasts again? Can I turn my cheek quickly enough so his kiss lands there instead of my lips? )

    With the filter gone, some of those things became more evident. Whatever social adjustments he had made to fit in were no longer there, and he became more self-involved, far less interested in others.

    I have had a difficult time since his death with resolving these feelings. I didn't like him all that much, but I also felt terrible that he was suffering.

    I have so much respect for your ability to take the "good" with the "bad" and continue to love.

    1. I think the issues you raise are so poorly understood by EVERYONE. That's why I just really needed to write it down - because it is SO trying and painful on the bad days. I can already feel that when this comes to its inevitable end, I, too , will have a lot of unresolved feelings about it. I already do - and I don't see anything to lead me to believe that's going to improve. But on my good days, I can see that Alex is merely trying to solve problems with the tools he has. On the bad days, I take it so personally that I dissolve into tears or become furious. I think your situation is different from mine - and I cannot imagine how difficult it was for you.But maybe it will help you a bit to remind you that the symptoms of this illness start many years before they become really apparent, and he may have been suffering much longer than anyone could have ever realized. Here is a virtual hug for you!

  3. Profound! You are an amazingly gifted writer!