Not that I'm going to tell you how old I am, but for the sake of putting this story into a timeline, I'm willing to add that I came of age in the nineties. Nineteen hundred nineties. (Sorry, couldn't help myself.)
I only put this in to avoid the miserable and endless whining that I never use a date to place the story. If you ask me, that's just a covert form of control - sigh. Is there a date mentioned with Snow White? Do you guys ask Clarice Starling about the dates she went to see Dr. Lecter? Not me.
Anyway, my entry into adulthood was accompanied by the right to die. At least the debates and discourses about it. Not that this is the theme I want to talk about, but indirectly it has something to do with it.
If you'll allow me, let me tell you about May here, and if I may be so bold, to keep the question in mind: what does it mean to disappear? And when does this start? Where is the exact moment, when someone starts to vanish?
- "Dignity, always dignity."
This is a line from one of my grandfathers’ favorite movies: a story about a popular silent movie star, with humble roots.
Back to May. I met her in an elderly nursing home where I worked at the time. A job that I accepted because my bills had to be paid "urgently", but where I nevertheless learned so many things that are not part of the curriculum at any university.
May was one hundred and four years old when she didn't wake up one morning. I went to her memorial service, where I couldn't suppress the feeling that she could come back at any moment. That she would glamorously jump from behind a standing garland of flowers or something.
May told me she ran away from home when she was seventeen, and found a job as a stage assistant, doing Vaudeville shows and magic tricks; glitters, and feathers.
She met an older man there, who was the permanent magician of the house. Her performances consisted of, among other things, jumping out of a large trunk, which supposedly once housed a great treasure. During the act, the story of how the magician came into possession of the trunk was told very theatrically. Of course, the trunk was hermetically sealed, and when the audience was convinced that it would be impossible for a mouse to escape, May kicked up one leg first and then the other. The magician then grabbed her by the waist and lowered her to the floor, where she had to perform a dance. The crowd went wild!
In another performance, her feet were tied to her neck, and she was chained to a post. A curtain fell to the floor, and voila! May reappeared as a ballerina with wings, fluttering across the stage. She never betrayed the secrets of the stunt to me or anyone else (as far as I know).
May harbored a great interest in the paranormal. Halloween was her highlight of the year. She had attended numerous seances during her lifetime, awaiting communication with the departed. She never betrayed me with whom she hoped to connect. Who knows? A long-lost lover. Anyway, he never showed up.
Every time I visited May I felt that her end was near. She had always been a petite woman, but I watched her get smaller and smaller.
During the service, I imagined her performing one of her acts as a surprise. That she would push open the coffin with her legs, one up, two up, and one last burlesque dance number accompanied by Michael Bublé or Sinatra. That she would somehow break free from the shackles of death. However, there was no coffin at that memorial service. So, this scenario didn't work. Still, one could expect anything with May.
How would it feel to hold the keys of illusion; to know how to break free and feel the weight of the wisdom of magic? Does one then have the knowledge to disappear in a good way?
Before the service, I had been reading some of the funeral cards and overheard some residents of the nursing home gossip that May once auditioned for the great Houdini. As I was eavesdropping, my mind drifted to my grandfather. He was a tap dancer and there was no instrument he didn't master. While his life hadn't been nearly as glamorous as May's, he still lived a remarkable life.
He survived the German death camps, but when he came back, he no longer considered a career with Fred Astaire's allure. He kept his passion for music and usually played by the river in the evenings.
How can I portray a man whose memory is always evoked by what might seem silly to many: a man in love, dancing the stars from heaven when he´s happy, playing in puddles like a kid, rushing into the street at night in a chilly rain, displaying warmth and happiness. But let me return to my question: how do I do that? Write a portrait of a man who cannot be portrayed.
He was a contradiction, made of incoherence and loss. The sort of subject that many people would find no subject at all.
His irreducible self can only be sensed through his residue, for indeed there are those who claim they can still hear the taps of his shoes clicking on the floor. Sometimes subtle and slicing, other times heavy and clear, like a wave crashing on the floor, or a line through the silence carrying children's laughter in the wind.
A dancer and a musician; that was who he really was. His crystalline tone often compared to jazz. Plie or hoofer in an upward stance, the world around him would absorb his resonance. He would make them move with him and share in his exhilaration, soaring through the air and lifting hearts.
He was both movement and music. He performed nuptials of music to a narrative art, telling inescapable stories with different layers of emotion through his movements, rhythm, and dynamics.
The stars shone brighter on the nights he danced, and the moon would cover herself in strawberry pink.
That was before it got dark in the world, and he was converted into saleable property.
He longed for death under a moon dressed in black, while he was starving.
What was left of him after that? After the inedible fairy tale of white supremacy had resulted in a defeated German nation and an equally inedible and discredited gospel of European cultural superiority took over. What was left of him?
And what lay ahead for him? A conundrum of racial identity he didn't care for.
He became a blithe trespass on hyphenated ground, bodying forth the contending forces that made him broken henceforth.
He was no longer able to dance when he came back from "abroad". He still played his harmonica though. Sad and flattened melodies. He engulfed himself in solitariness.
He loved Augusts. The earth too dry, sizzling a delayed slow rhythm like dark molasses. A sense of anticipation in the air, a longing for rain and for things forgotten.
He was barely visible as he walked through the sunflower fields in the morning, a cap on his head, eternal cigarette bud in his mouth, tanned by the sun. He went fishing in the afternoons, basking in the happiness of a former place in a distant time. Recollecting odors of damp soil in a lush forest and a most remarkable girl in a pretty dress, who knew all the things he dreamed of and sat with him amongst wildflowers and dazzle audiences at night with their flair on the dance floor, expressing love´s moods, courtship, and seduction.
Yes, he would linger in the sweetness of a repertoire of a far connection.
At sunset he would take his harmonica out of his pocket and passionately tried not to heed the demons in his head that originated from an abusive culture, shattering his soul a little more every day. His music was not sweet anymore: it moaned bitterly and built into a crescendo of heart-wrenching screams.
He gradually disappeared; my grandmother told me. When he was not in bed, he was in an old wheelchair and spoke very little.
-“ He was gone, long before he exited this earthly sphere.” she sighed.
A few weeks after May's memorial service, I attended a workshop on spirituality and dementia and caring for people with dementia. I hoped it would help me understand what contributes to the invisibility of people with dementia. I quickly concluded that there was a ubiquity of malignant social psychology in relation to people with dementia. I made a list of the elements that contributed to the depersonalization of patients with dementia. Betrayal, powerlessness, infantilization, intimidation, invasion, banishment, ignoring, ridicule, and contempt. I had a few more: thirty-seven, I believe in all.
If you ask me, the only thing you will achieve by that is promoting a neurological decline in those people. The sad thing is that cultural intolerance to cognitive impairment as well as old age comes off unscathed. And herein lies the frightening prospect of the person with dementia, not just disappearing on their own, but being obliterated by our malfunctioning diseased public mind.
I arrived at work one day, still clocking in, when I heard one of the residents screaming and banging her fists on the table.
A colleague explained to me that she had been terrible, that she kept yelling dirty and mean things at everyone, that she did not want to eat, and insisted on being served vanilla custard with chocolate sauce after lunchtime.
She was hungry, of course, so I went to buy her a cup of pudding from one of the vending machines. She threw it at me, and the pudding splashed everywhere. That was the end of my last clean uniform. She called me all kinds of bad names. She was denied the food of her choice and found herself surrounded by malice. I asked her if she would like a sandwich. She was very happy about that, and while I was making her sandwich, she told me about how she used to make jelly and peanut butter sandwiches for her kids when they went to the beach.
Mental abilities determine one's moral status, i.e., reflect the hypercognitive values of our culture: we exclude people while they are still among the living. Or is this a prejudice of mine against the profound forgetfulness of those who can eat pudding when they feel like it?
Our culture fears both powerlessness and the power of the body. If a body is unmanageable, it must die. That body which is a constant source of conflict and at the same time our home, from which we cannot escape. Our battlefield where we struggle against its inevitable demise. We wish so much that trunk would pop open and reveal our legs to finally throw off the shackles.
The body that becomes the object of contempt as soon as it needs hands-on care because it exposes our collective fear of vulnerability.
A few weeks after May's memorial service, I attended a workshop on spirituality, dementia, and caring for people with dementia. I hoped it would help me understand what contributes to the invisibility of people with dementia. I quickly concluded that there was a ubiquity of malignant social psychology in relation to people with dementia. I made a list of the elements that contributed to the depersonalization of patients with dementia. Betrayal, powerlessness, infantilization, intimidation, invasion, banishment, ignoring, ridicule, and contempt. I had a few more: thirty-seven in all, I believe.
"The dead don't visit us often anymore," May said to me once when she told me about her participation in séances.
Could it be that today we are more interested in the life of the dead than of the living? We've all forgotten more than we remember. The profiling of disappearing is something that must be lived with. But disappearance doesn't necessarily mean destruction.
Despite all his losses, my grandfather didn't just disappear. In his way, he persevered and kept playing his harmonica. What else but an affinity with life is behind playing an instrument? What else but to make his will to live known, in subtle tones, known only to those who spent time with him, as the activities he once embodied fell away.
What is left behind may be a truer self. Once the path is cleared for the naked self and facilitating a new freedom, where parallel lines converge on the horizon( which is also the point where they disappear). The point of convergence and disappearance.
But isn't that vanishing point an illusion? A road does not stop at the horizon, it merely disappears from the view of the observer.
And so, it is with people suffering from dementia. They exist beyond our ability to keep them in our line of sight. But they remain a person; a human being - despite our limited sight. So that disappearance is, in a sense, just an illusion.
There are no magic tricks to undo our finality.
May briefly managed to disappear into thin air and then reappear in breathtaking fashion during her career as a stage assistant to a handsome illusionist in a tuxedo.
Perhaps disappearing well means allowing others to decompose with dignity, while keeping their secrets.
I hope that when it is my turn to disappear, I will have a willing assistant who knows the illusion of disappearance well.