Arch of Hysteria                                               1993                                      Louise Bourgeois

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Memory is so much a part of who we are. Without it we are always in the now, without an anchor for our existence.

Before too much time elapses, and I forget, I want to describe the things I have experienced over the course of the last days. A lot has happened, and today marked an ending to a source of support.

But first this will be about art….

I visited the Museum of Modern Art and The Rubin Museum of Art, attending programs for people with memory loss and dementia.

Last Friday, I attended the Mindfulness Connections program at The Rubin Museum, which is offered once a month. I traveled there in bitterly cold weather, with the young woman who was my part time companion (who told me today she doesn’t want to do this anymore). We met with others in the cafe on the ground floor of the museum. I spotted a woman sitting at the long table where we gather, who I had not seen before. She has early onset Alzheimer’s. She is 65, quite lovely, well groomed, and young looking for her age. She seemed cheerful, and I thought I had finally found someone like me that has Alzheimer’s early stage, that I could communicate with. Maybe this can become a friend, I thought. An email buddy, or someone I can speak with on the phone. How wrong I was. She was accompanied by her aide, who had a lilt to her Jamaican accent. I approached this woman and introduced myself. I read the name on her name tag. “Hello Marianne (not her real name)”, I said, and shook her hand. I asked her questions about herself, such as where she lived and does she use email, and does she use a computer. She said yes, she does. Her aide quickly interjected, shaking her head, that she was in middle stage Alzheimer’s, and said that she plays with things and looks at things, but that NO, she is not able to use a computer and has no access to email. I wondered if she could read. I asked her where she lives, and she mumbled an M sound, Mmmm…. I  asked “Manhattan?”, and she nodded and smiled. During the discussion about the artworks, she was not able to articulate very much at all about what she was looking at. We looked at a painting of a wrathful deity and I remembered seeing this same work during previous visits. I addressed the docent, saying something about how the prescribed methods of Buddhist art is so unlike contemporary art, where the artist determines the content of the work, displays a personal iconography and ideas, and how this, like all religious art, dictates a prescribed system of belief. I said I think that this is the same as in Christian art, and all art that is based on religious doctrine. I still know enough about art to know that sacred art involves the ritual and cultic practices and practical and operative aspects of the path of the spiritual realization within the artist’s religious tradition. There was a group of visiting advisors along for the tour. Junior dementia experts, I’ll call them. I sensed their surprise that someone diagnosed with this disease was able to comment perceptively about the artwork. I exceeded their expectations. How lonely this made me feel. Here I am terribly aware of how changed I am, articulate enough to find the words to describe my experience, but dependent on a companion to cart me around. Afraid to travel alone, aware that I have lapses and can end up stranded. I’m unable to gauge when to leave my home and be there on time myself, not able to simply be independent in the outside world. Regressed, angry, petulant, but  still able to think critically, and see the connections between disciplines. Wrathful Deity – Yama

The questions posed by the docents included some one would ask a child in an art class, “what colors do you see” “How is the color of the figure in the center different from the others in the painting”? Marianne responded to the red in the image, agreeing that she was indeed seeing the color red. My frustration was mounting, as I saw once again, that I am at a stage where I’m aware of what’s happening to me, and grouped here with others who are further progressed. Who will I be in a year, two years? Will I be able to speak about my ideas, voice my thoughts, respond intelligently to questions. Will I be like this woman, not know where I live, unable to write this diary about my experiences?

I asked Marianne’s aide, what she is like during the day, and she told me that she walks a great deal, is surrounded by her family, sees her grown children, and is quite happy. Wow! She is happy! How can this be? She must have had a nurturing mother, I think. She must have been a happy person before this happened to her.

A goofy old fellow in his 80’s, who I met at Rubin before, kept repeating that he had been to the Temple of the Tooth during WWll. He had repeated this same thing when we viewed the Tibetan artworks before.  Over and over he repeated this. He’s just an old man who repeats himself, right? But this time I became annoyed, my tolerance strained. Irritated. The slogan, “When you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”, comes to mind. I am so unlike him at this point. I’m about twenty years younger, and there is no point of reference for us to be together in this place, except for the art. Ok, I must practice acceptance. OM………………..

The previous day, Thursday, my husband took me to The Museum of Modern Art in NYC for a program for people with memory loss offered through the hospital where my neurologist practices. He took the day off from work to take me. We entered the museum at the education resources entrance, where I had taken students to visit the museum for tours many times, when I was still working. I used to go there all the time with friends and alone. The last time I’d been there was 3 years ago, when I was teaching and an active working adult with a very full life. The people attending the program were not Alzheimer’s patients, except for one. One optimistic man with a sunny disposition, accompanied by his wife, was a patient who has some memory loss, but clearly is normal, high functioning. This couple were both in their 70’s but looked much younger. Then there was another fellow, who looked like he was in his late sixties. He was in his own world, non communicative, in a daze, accompanied by what appeared to be his son. It looked like Alzheimer’s or FTD, middle to later stage. I was distressed at witnessing the disparity between those who attended,  those who appeared normal and this fellow who was so far away cognitively and emotionally blank.  Me in the – in between, spatially disoriented, anxious, needing assistance, communicative and aware. I would be disoriented making my way around this museum that I had visited so many times by myself and with others.

I remembered so many of the artworks, remembered the names of the artists, and recognized their signature styles, and eagerly participated, voicing my wealth of knowledge about contemporary art, when the docent who led us through the galleries referred to specific works.

MEMORIES, ART AND ME:

There was a major installation by the late sculptor and artist, Louise Bourgeois, who wrote my recommendation for graduate school, back in the day. I met her in 1978, when she invited me to her Chelsea townhouse. Her studio was in the basement, with sculpture in various states of completion. She was by that time a widow, exhibiting her sculpture at Xavier Fourcade gallery on the upper East side, which I went to when I visited the galleries every week or so. She was around 70 at the time, and I admired her singularly personal work immensely. She persevered in making art and building her art career at an older age, and was just beginning to be recognized publicly. This was at a time when women were having a rough time getting their art work shown in New York galleries. Bourgeois was tiny woman, but I could see that she had a strong body. Her eyes were light blue and piercing. She offered me some jellied pigs feet to eat, which I declined. Two young women were romping around her home happily, and she said, she never would have been able to have young people in her home like this when her husband was alive. Her late husband was a historian, and she described him as very rigid. They had had 3 grown sons. I understood that for her art, making art, was about freedom, self expression, choice. She chose a  lifestyle that enabled her to be extremely prolific. She was disciplined and worked every day. She hated to travel. She created thousands of artworks during her career and is now considered one of the most influential artists of the twentieth century. Working with a wide range of materials and forms, she created a body of work that extended over seven decades.

I sat in her parlor, as she nibbled on pigs feet, as she looked at my drawings and projected slides of my sculptures. I was 24 at that time. She examined my drawings, stopping to look for a long time at my graphite drawing, that I called “Cups”. It is an image of towering teacups, that teeter precariously, with an insert of a woman covering her face with her hands.  She blurted out, “I think you like to torture yourself”. I can’t forget that. I thought it was a great drawing. She saw masochism. She was wrong. The drawing was about fear. Lack of protection. Vulnerability.

Bourgeois was able to discern something about masochism that she saw in this drawing, and I understand that when we are young, we try to connect with our parents.  Some of us are  lucky to have emotionally available parents who are capable of providing  us with a secure attachment.  Some of us are not so lucky.  This is a  huge problem because we associate love with what the relationship with our parents or caregivers feels like.  We associate love with what our  childhood home felt like. In other words, our subconscious definition of love becomes what home felt like for us as a child. The drawing embodied this lack of a secure attachment. I did not feel safe.

Here are some of Bourgeois’ exhaustively prolific works from the MOMA exhibition. She said the use of the spiral is an attempt at controlling chaos. She would often combine forms with parts of the figure.

Femme Maison (1946-47) is a painting and drawing in linen, that speaks to the work she made about architecture embodied. For Bourgeois, architectural structures and room like chambers represented safety, and refuge, and conversely, entrapment. Cell VI, 1991, painted wood and metal

She began a series of room-like sculptures called Cells in 1991, eventually creating sixty examples in varying sizes and complexity. Some are filled with a haunting mix of her personal belongings. This is among the simplest. She often chose the color blue for it’s serene and calming effect.

I Redo (from the installation I Do, I Undo, I Redo) 1999-2000, steel, glass, wood and tapestry

Throughout her career, Bourgeois turned to the figure as a means for self portraiture and for examining her relationship with others. They often contain elements of the real and surreal. She treated the human figure as a vehicle for comprehending her fears, desires and vulnerabilities.

She was raised in France in a family of tapestry restorers, and introduced fabric into her art when she was in her eighties. She decided she no longer needed all the clothes or household fabrics she had saved for years. She would hang dresses, slips and coats in her cell sculptures, and cut up cloth for stuffed figures and patterned collages. Stains, scorches, testify to the the old garments history.

Below is a painting by Brice Marden, titled Vine, from 1992/1993. To the left is an opening in the wall, and through it a sculpture of one of Louise Bourgeois’ “Spider” sculptures hangs in midair. They are grouped to play off of each other. Marden’s abstraction in Vine, playfully embodying a web design, against the sinister Bourgeois Spider.

Marden is another artist I knew back in the day. His daughter attended The Little Red Schoolhouse, the same school my then very young son attended. We would greet each other in the morning as we dropped off our kids at school. I would go to the gallery I owned then in SoHo, and he would be off to his studio. This was thirty years ago. Normal life, a busy life, an active life. Then. He was already famous for his spare and minimalist paintings. At almost eighty he is still a working artist, and owns a huge chunk of SoHo property, making him one of the wealthiest American artists around. His works sell for around 10 million for a painting. Maybe I should write him a note and tell him my story. I wonder what he would think and if he would read my blog.

I have to include one painting by Pablo Picasso that I loved as a child, and saw this again at MOMA. Three Musicians is an oil and collage painting from 1921. The painting features three musicians, dressed as a monk, a pierrot, and a harlequin. It’s a perfect example of Picasso’s Cubist style. In Cubism, the subject of the artwork is transformed into a sequence of planes, lines, and arcs. Cubism has been described as an intellectual style because the artists analyzed the shapes of their subjects and reinvented them on the canvas. The viewer must reconstruct the subject and space of the work by comparing the different shapes and forms to determine what each one represents.

As a child I had no understanding of Cubism, yet I found this painting unforgettable, and looking at it made me happy. As an adult, I learned that Picasso was a misogynist and that many of his children and grandchildren suffered great psychological trauma. Among creators of genius, Picasso was not alone in carving a path of emotional destruction through the lives of those closest to him, but his record is nevertheless chilling. In the years following his death in 1973 his second wife, a longtime mistress and a grandson committed suicide; his oldest son was killed by drink; and almost everyone else related to him was scarred by the experience. His granddaughter, Marina Picasso, wrote in her book, Picasso: My Grandfather,  “He needed blood to sign each of his paintings: my father’s blood, my brother’s, my mother’s, my grandmother’s and mine. He needed the blood of those who loved him — people who thought they loved a human being, whereas they really loved Picasso.”

(Below) The End from 1991, by Edward Ruscha, evokes a split second of film projection on the big screen. The effect of instantaneity is enhanced by the imperfections and vertical lines in the gray field, which are intended to resemble the tiny scratches, scrapes, and particles of dust that can mar film and projector lenses. The fuzzy contours of the airbrushed letters, split between the top and bottom of the canvas, suggest that something is amiss in the projection of this particular movie frame. The illusion of continuity is not being created. This “illustration of an out-of-sync mode,” as the artist has described it, refers to the past  and the future — once the technology of celluloid film is obsolete, if not totally forgotten, will the painting be recognizable? The title and subject of the work remind us that the continuum of time is composed of the momentary; a flash of ending differentiates past from present and present from future.

Endings. Continuity. Endings that lead to new beginnings. Endings that are a goodbye.

Another ending. Today. There have been many during the course of this disease. Too many. A sea of strangers paid to care for me. It is an abrupt ending.  I am so worn down from abandonment. The young woman who has been my paid companion since early October, has resigned. Why? She didn’t want to do this anymore, she said. She wasn’t designed to be a home health aide for a woman with early Alzheimer’s. She’s a young woman who has had many issues, health issues, both psychological and physical, and is fragile. If I had known better, I would not have allowed myself to get so close to her. I became accustomed to her helping me. I became dependent on her. That’s a danger for people with this disease. We can give up too early what we can still do for ourselves. But her presence brightened my day, and I would look forward to her presence. My husband hired her after she visited me as a mitzvah (good deed), prompted by my rabbi sending her a text that there was a woman in the community who would benefit from her visiting. I really liked her, trusted her, appreciated her help enormously. Now she won’t do this anymore. She told me she wants to live her life, pursue her design career. I can understand this. My own daughter is doing exactly that, working as a TV producer and living with her boyfriend. She wants to live her life. I thought having this companion would free my daughter to do just that, and afford me the opportunity to still have a companion who would make sure I ate (I forget, don’t have an appetite), make sure I did not get lost when traveling, would help me exercise, and help me remain functional, conversant, have structure in my life. I thought this would help keep me in the early stages, as long as possible.

Who wants to be saddled with the job of being a companion to someone who is losing their mind? Last year I interviewed a home health aide who arrived 2 and 1/2 hours late, had a bouffant of dyed blue hair and weighed around 300 lbs. My husband told her that I become anxious and when stressed, argumentative and strident. She told him, I know how to handle Alzheimer’s people who get like that. I pictured this huge woman holding me down. Pinning me to wall.  Clearly it was not a good fit.

But the symptoms are not getting better. I am scared of the person I was this past summer, sitting all day in the house alone. It was only when I came “out” to my religious community, the rabbi, a friend who had worked on my films, an acquaintance who had experience with people with Alzheimer’s, that I have this disease, that visitors started taking an interest in helping me out and keeping me active.

I’ve been through many aides since the insidious onset of this disease. I know that the personality changes that are currently happening are a result of my dementia. Persons with dementia have a change in personality. Aggression, anxiety, depression, agitation, and paranoia are all aspects of dementia. Psychiatrists prescribe anti-psychotic medication to help reduce aggression or an anti –depressant for anxiety or depression. Anti-psychotics are black box warned against for people with dementia, yet psychiatrists still prescribe them. Many anti-depressants are anti-cholinergic and kill brain cells. It was a cocktail of antidepressant medications and benzodiazapines that hurt my brain, disrupted synapses. I wish I had never taken psychiatric drugs, ever, but I did and began in my forties because I believed they would help with depression. This young woman, my former companion, sustained neurological damage from the same drug, Klonopin, that hurt my brain, and contributed to pushing Alzheimer’s disease in my brain http://www.psychiatryadvisor.com/alzheimers-disease-and-dementia/benzodiazepines-alzheimers-dementia-death/article/443262/. We shared this, and she sympathized with my condition. She has vertigo, and says she couldn’t walk or talk for four years as a result of the damage the drug caused.

I need assistance with many activities of daily living. But you can’t buy a friend. Here was an employee that my husband hired to be my companion. I made a mistake thinking this perfect stranger would be my friend. I am still strong and have to stand tall for myself, and battle this disease. I’m doing that by writing about it. My husband, though embittered and exhausted from being a worker and a caregiver, is here for me. He may not be a great conversationalist, but he is my dear care partner. Anyone he hires to help clean our home, or serve as a travel companion for me, is not invested. He is.

I have a beautiful granddaughter who turned two at the end of October. She is the daughter of my son and his lovely wife. She will not know me as the normal grandma I would have wanted to be for her, but I try my best to engage happily with her when I see her every few weeks. She is the beginning, the joy taking flight, and I am waning at an age when this should not be happening. Her great grandma, my husbands mother, lived to be 94. She had Alzheimer’s in the final years of her life, but when she was my age she was the greatest grandma imaginable for my son, spending time with him with gusto and exuberance. My son traveled with her to Disneyland after her husband (my husband’s father) died of a sudden heart attack at the age of 70. She rode the rollercoaster at Disneyland with my son, her little grandson, spent so much time with him and adored him. I married young, and in a sense she mothered me too. I feel her presence now fortifying me to be stronger. To accept the love that’s offered. To not depend on strangers to take over what I can still do for myself. I adore my little granddaughter.  I doubt I will be able to be like the grandma, my son’s mother was for my son. Logistically it’s unlikely, which makes me sad. She has another grandma, the mother of my daughter in law, who she will likely do these things with. Before I was diagnosed, I imagined I would be the kind of grandma who would take my grandchildren to museums, the theater, introduce them to great New York restaurants, the theater, be the one to be sure to introduce them to high culture. But I can still play with her, sing to her, and watch her as she grows smarter and stronger every day, bless her.

I was born into the Baby Boom generation. My granddaughter was born at the tale end of Generation Z. She will be a part of a generation of self-starters, self-learners, and self-motivators who will stop at nothing to make their mark on the world. Being born at the tale end of this generation, she will likely be a maverick. I see it in her now at only 2 years old. She’s a brilliant ball of energy. I pray I will get to know her, and be cognizant of her as long as I am alive, never forgetting to be able to still give her the best of myself.