Living with Alzheimer’s is a lesson in the mystery of life.
Pieces of self just disappear.
Goodbye, husband, head of the household.
Good bye, husband, chief gardener.
Goodbye, husband, master chef.
Goodbye, husband, protector, friend, confidante.
Goodbye to the man who told me I was lovely.
Goodbye, goodbye, goodbye.
Fragments of self are swallowed up, bit by bit, in the voracious maw of Alzheimer’s. So many pieces flew away over the years , I found myself wondering what is self? Which aspects of it are essential? What makes us human? What is left when self disappears?
Consider the eyes. One day, they are vibrant. They not only see, they reveal, they mirror, they are eloquent. Look away and when you look back, in what seems a mere second, all that is gone. The eyes are there, and they function: They see, but there is nothing to see in them. They are vacant.
Many writers have expressed the thought that the eyes are the mirror of the soul. If that is so, when the eyes go dead, does that mean that the soul has died before the man?
As we descended deeper into the abyss of Alzheimer’s, I found myself thinking more and more of the Latin word ‘anima’, which suggests to me the life force, the difference between being human or merely a shell. Some call it soul, or spirit, but anima resonates with me because my husband was always animated — big warming smile, eyes alight with interest, humor, tenderness, a body always in motion.
I could describe my husband, tell you his height, weight, the perfectly shaped head, the long back, the narrow feet, the beautiful hands. I could do that so well that you could picture him. But you would not see him – unless you could also conjure up the anima.
When you are with someone when they die, you become acutely aware of that life-force because, suddenly, with one breath not taken, it is gone, and the difference is both profound and devastating. On the threshold of death, you see, vividly, the true meaning of life. Over the years, I had lamented the loss of my husband’s abilities and strengths. But those losses were suddenly irrelevant, just tiny chips in the identity of the man, nothing, nothing, compared to death itself.
I was at my husband’s side. He had been in a coma for several days, but life was still there. He was still with us. Breath, color in the skin, warmth in the hand, a reflexive twitch that might have been, could have been, (please!), recognition. And then, in an instant all that changed. I am still shocked at how quick it was. One breath, not taken, and color, warmth, anima left the body immediately.
My husband was gone. I saw him go. One year ago today.
The body remained and it was as handsome, elegant, distinguished, as ever. A few days later, we would bury that body, according to the solemn rituals of his religion.
But that was not what I loved. What I loved was the invisible, indescribable self.
Call it soul, spirit, anima: That is what sets us apart, gives meaning to existence.
The elegant man, my dancing, life, loving, partner is buried. But the anima remains. It lives on, as the rabbis say, in the lives he touched on earth, and in the hearts of those who loved him.
And, in yet another reflection of the mystery of life, it lives on in a more palpable, intimate, way, a vibrant presence, invisible, inexplicable, but very real, beside me, surrounding me, at unexpected times.
I am, by choice, spending today alone. No phone calls, no email exchanges, no company. The memorial candle is lit; the skies are grey; I will listen to music we shared together, revisit our life in photographs, and allow myself to be open to the anima.
He is, and will be, very much with me. My beloved.