Double self portrait – Before and After

Three weeks ago I fell down the marble stairs at a museum in New York.  A lot has changed. I haven’t written in a month. I thought I couldn’t write the blog anymore. I wrote an email to my friend Michael in Poland and told him I had been injured, and since then everything has fallen apart and I didn’t think I could write again. He wrote me back and sent encouragement. My husband wants me to keep writing. So here I am back again, limping through my words.

Confession. Why do I feel I am being punished? Punished for not respecting the sanctity of my body. I have poisoned myself with medications over the years, believed in doctors who harmed me. Smoked like a fiend starting when I was a teenager, drank to excess, ate so many sweets, so many fatty foods resulting in high cholesterol, and pre-diabetes. Just when I thought I’d turned things around, weight training and biking and vigorously exercising, eating mindfully, taking supplements, sleeping soundly, a relapse of depression and anxiety that was unlike any other of the previous five relapses, came upon me in the summer of 2015. That was when this started and it has been a series of step downs from there. When this began, I told my husband that my experience of reality had changed. Initially everything was too sharp, daylight too bright, the contours of everything I saw, too crisp, razor sharp. Unlike some with this diagnosis who say they experience brain fog,  I was experiencing a heightened sense of reality, more like a bad LSD trip. I couldn’t stand it, so much anxiety, unbearable depression. I sought out medical help. The psychiatrist thought I was bi-polar and prescribed yet another anti-depressant, this time Wellbutrin, along with Klonopin, and Ativan for anxiety. I followed his directions, and two weeks later  (this was November 2015), I woke up dreaming fragments of a dream WHILE I WAS AWAKE. Fragments of a waking dream. I tried to remember these fragments, but couldn’t. The psychiatrist said I was in a mixed state and wanted me to take Saphris, an anti-psychotic (I’ve since read that Saphris is contraindicated in Alzheimer’s or dementia related psychosis and can cause a stroke and death – black box warning). I said no. I knew it would cause Tardive Dyskenisia and I didn’t want my face twitching. Instead I requested to be tapered from the Klonopin. So that’s how it started. A psychotic break precipitated by taking psychiatric medications. Then I got a urinary tract infection and myoclonus (twitching of muscles in my thighs and extremities). I hadn’t had a urinary tract infection since my twenties. I thought it was all because of the medications and I asked the psychiatrist to taper me off. My previously normal sleep cycle would never be the same again. I became an insomniac, unable to sleep at all, unless I took a small dose of Klonopin, and then only for an hour or two. I began stuttering and developed a kind of narcolepsy where I would fall asleep for a few seconds or a minute with my head slumping over, and then wake up with a startle. So for me the start of this was terrifying! Not the bewilderment and slow decline of old age senility (a la Ronald Reagan, the late president). No. it was sudden and the change was abrupt and catastrophic. I could not understand what was happening to me. My husband was panicked too. Four years is a long time in early onset Alzheimer’s. Some die within that period. I’m still here declining. In all the ways that make the experience of this a ongoing saga. I’m aware of how slow I am. Today my husband took me for a walk. I was walking at practically at a snails pace. 

So with nothing but time on my hands I have looked back. There had been symptoms of forgetting, but I knew nothing about Alzheimer’s. In 2014, five years ago, I noticed I was unable to remember some of my students names. I had trouble learning the lines to a play I was in. I tried to learn a simple application on the computer that I needed for teaching. No matter how many times my colleague showed me how to do it, I couldn’t remember the steps. I was forgetting the passwords for various credit accounts and had to write them down repeatedly. I would walk into the bedroom and not remember why I was there or what I was trying to get. There were signs, but because I lived alone then, and knew nothing about neurodegenerative diseases, I ignored them. There were also falls. I fell getting out of a taxi, I fell walking home from school, I slipped and fell down some of the spiral stairs. I was forever bumping my head and when trying to retrieve art materials from a shelf above my head, pulled down a heavy box that fell on my head. I thought I was just becoming clumsy.

I didn’t know that depression and anxiety are symptoms that can lead to Alzheimer’s. I had what was diagnosed as major clinical depression, and was put on antidepressants at high doses, that were always introduced with benzodiazepines (Klonopin), that were withdrawn after a few weeks. I hated the side effects of the SSRI’s. There were many physical side effects, the least of which was I getting fat. I would slowly taper off the antidepressants and be fine for a while, but then the depression would come back. I was on this cycle for a decade. The depressions kept relapsing. I had been exercising at a gym for years, and so thought if I ramped that up I would be okay. I began weight training with a personal trainer twice a week and rode my bike for miles every day. I thought I was accommodating to the changes in my brain, by religiously going to therapy, pushing myself to show up and do a good job teaching. I overcompensated by working longer hours and harder. I prepared great lectures which my students enjoyed, and was additionally offered to teach courses in film producing as an adjunct professor at NYU. I thought the feature film project I had begun in Poland (The Lilliput https://player.vimeo.com/video/91234297)as an American Fulbright, would be my next life after teaching, and that I would make more films after that. I had another completed script, Sonia’s Flame, that I knew would make a great film. Along with teaching, I traveled during school holidays and in summer attended film markets in New York and California, and returned to Poland where my art director introduced me to a producer, who offered to get the film made, if I could secure half of the backing. I thought as long as I keep moving forward, exercising, and working, writing a great script, and finding a producer,  I could make my dreams come true.

What I did not realize is  how inwardly frantic I was. That I was not in control. That something ominous was happening to my brain, and that all my plans and aspirations were silently about to be dismantled.

Alzheimer’s is a ticking time bomb.

Anosognosia means having the disease and not knowing it. I know now, but  I didn’t know then. I was not aware of how difficult it was to keep juggling the many aspects of my life. I just kept going. Accommodating. Now I am hyper aware of my decline, and it has been steep with rapid progression. In less than three years since the diagnosis, there is little I can get done. Getting dressed, groomed and ready for the day is a goal now. Taking a walk is very slow now, and chewing and eating a meal, without choking is a big deal. Taking a shower and washing my hair is a conquest. I am acutely aware of the stark contrast in who I was, and what I have become.

This disease is hideous, demonic and fatal.

I have trouble moving around now. Motor impairment. Every thing I do has to be planned out in steps. Eating a meal is a slow process – chew and swallow, take sips of the vegetable drink my husband prepares for me. Still I choke. It’s hard to swallow. I speak to myself to make sure I am actually doing what I intend. I hate getting wet! I used to love to take a brisk shower. Now I have to force myself to shower and wash my hair. I procrastinate and finally in the shower I pause to jar my memory to remember the steps in cleaning my body and wash and condition and rinse my hair.  I sit for hours and hours playing Lumosity games on my iPhone. Then I get up to move around and end up pacing. Pacing is purposeless behavior that expresses anxiety. When I pace in my house, I’m a  body without a destination. I’m a human being with a horrible disease that has progressed rapidly. Younger onset Alzheimer’s is when It’s diagnosed under age 65. I was 62 when I was diagnosed. It often progresses fast.

When I stand up from a seated position, I lurch forward and then lumber from side to side as I walk. My sleep is broken into fragments – 2 hours and I wake, then go to sleep again, wake again after an hour, back to sleep for another hour. The sleep dysfunction began after I tried (with the supervision of the psychiatrist) to taper off of the Klonopin he had prescribed to which I had a paradoxical reaction (instead of sustained sleep it would not allow me to have sleep). That was November 2015, and while the diagnosis did not come until late 2016 (Spect scan) and again in February 2017 (FDG PET CT), the disease began in earnest in 2015. Before that I used to sleep well and didn’t have insomnia.

As depicted in my drawing, BEFORE is what I was like before 2015 and what I’m like now, AFTER is the consequence of progressing from that point. BEFORE I have read is the prodromal state of the disease. It could have been going on for a decade or more, and I was unaware of how I was accommodating. There were signs, yes, like never learning the room numbers to certain classrooms, and always checking where meetings were being held by peeking through the glass inserts on the door.

When I reached a threshold (assuming that it is tau and amyloid that are the culprits that destroyed synapses and neurons), and my synapses and neurons were fried, Alzheimer’s came and destroyed my health, my life and took away my sanity.

Some die as a result of having this disease within a few years. They say some live as long as twenty (though that is hard to believe, unless they are diagnosed in the earliest stages, or misdiagnosed, which I think is often the case). The average is five years. Pat Summit, the great basketball coach, was diagnosed with Alzheimer’s at age 59. She died at age 64. Some last for 7 or 8 years. Terry Pratchett, the English author of fantasy novels best known for his Discworld series of 41 novels was diagnosed with Posterior Cortical Atrophy, a form of Alzheimer’s, at the age of 58. The disease manifested slowly in his brain and he was able to write several more books, until 2015 when he died at age 66. He managed to maintain his macabre sense of humor.

On his twitter account he wrote these words before his death.

At last, Sir Terry, we must walk together.

Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.

The End.

Ashes, ashes we all fall down

The fall down the marble stairs at The Neue Gallerie

A year ago Jackie and Lon took me to the Museum of Modern Art in Manhattan to see the Brancusi exhibit. She marveled at how much I knew about his work, how familiar I was with the other artists work in the museum, their styles and why their contributions were important. A year ago my walking was not impaired, and neither was my speech. A year later, my balance is off, and walking is much harder to do. My speaking has changed. Aphasia. I do not recognize this strange alien voice that is MY voice now. Pushing the words out, I try to assemble my thoughts, I stumble on words, forgetting mid sentence where the story was leading. The worst is when I hear myself speak in word salad which I can only describe as verbal tangles of meaningless speech. I certainly write better than I speak. All signs point to more global impairment. The physical aspects of the disease are the most daunting.

On Saturday, June 1st, I fell down the marble stairs at The Neue Gallerie.

Jackie, who is the chair of Dementia Action Alliance, and a dear friend, proposed to take me to The Neue Gallerie, located on 86th Street near Fifth Ave in Manhattan, three blocks from the Metropolitan Museum of Art. This part of Fifth Avenue is known as Museum Mile, and I would go to all the museums on that street, alone, with my students, with my husband, with my friends.  I had taken my students to the Neue Gallerie, and knew a lot about Ronald Lauder, the patron of the museum. He had been the ambassador to Austria under the Reagan administration. Jackie and I talked about the painter Gustave Klimpt, and his painting of Adele Bloch-Bauer, that is the jewel of Ronald Lauder’s collection of Viennese Secessionist art. I told her that I had studied with Serge Sabarsky before I opened my gallery in New York in 1987. He was Lauder’s art advisor , recommending selections of  Austrian Secessionist art from Vienna for him to buy.  We talked about The Lauder Foundation and how Lauder was the patron that enabled Jews in Poland (and Czechoslavakia, and Austria) to reclaim their lost heritage by opening Jewish schools in the former communist block countries. He supported The World Monuments Fund, rebuilding historic synagogues around the world (in Morocco, India, Poland, Czechoslovakia, Amsterdam). When I filmed my documentary, Back to Gombin https://vimeo.com/124443430, I interviewed the director of the Lauder Morasha school, the only Jewish school in Poland. My film work, my personal history, my knowledge and love of art, are intimately linked and I agreed that this trip to the Neue Gallerie would be important for us to take together.

The trip started out well. Lon drove us through the Lincoln Tunnel and up the West Side Highway, exiting on 96th Street and heading East to go through Central Park.  We passed the Guggenheim Museum on 5th Ave, and Lon dropped us off in front of the Neue Gallerie.

We entered the museum and a security guard stationed at the entrance checked our bags. That was the first hurdle. Remembering that the Klimpt painting was in the second floor gallery, I headed up the marble stairs with its ornate iron banister that didn’t reach the bottom steps. Jackie and Lon were following me. She had my jacket on her arm. I heard the voice of the security guard tell Jackie that she would have to check the jacket (in the coat check). Standing on a step about a third up the staircase, I turned around to tell her I would put it on instead. Suddenly I was falling, my body crashing down the marble stairs. Obviously I had lost my balance, and I fell on my back, twisting my foot under the ankle, and scraping my arm which began to bleed profusely.

I was just trying to be who I was, the art lover, the historian, the teacher. I was trying to be who I was, physically adept and self determined. But then I lapsed, my brain and body disconnected, and I injured myself badly. Yes, people fall and injure themselves, but this was caused by my physical disorientation, my slowness, and an out of sync reaction between my body and my brain. I put the jacket on, bleeding inside the sleeve. No, I did not want a bandaid. I wanted my old self back but that is not possible. I didn’t want to pay attention to the pain in my foot, so I pressed on. I hobbled over to the elevator and we took it to the second floor, to see the painting of Adele Bloch-Bauer. My confidence at this point was quite shaken.

We stood near the painting. The room was crowded. I tried to take a photo and a guard told me photos were not allowed. I had already taken this one of Adele Bloch-Bauer by Gustave Klimpt. The jewel of the collection.

In postwar Vienna her image became a symbol of Austrian culture – Adele Bloch-Bauer I was long called ‘the Austrian Mona Lisa’. The painting later became an icon of justice. It was confiscated by the Nazis from the Jewish Bloch-Bauer family during World War Two. A long but ultimately successful struggle for restitution by Bloch-Bauer’s niece Maria Altmann led to the painting being sold to Ronald Lauder for $135 million in 2006. https://www.nytimes.com/2006/06/19/arts/design/19klim.html 

There’s more to her story. She appears in other paintings by Klimpt, sensuous works that suggest they may have had an affair. She had a deformity in one of her fingers, and the odd juxtaposition of her hands in the painting shows her hiding this. Her death at age 43 from encephalitus prevented her from going through the annexation of Austria by the Nazis, and potentially dying in a concentration camp. Who knows? She may have escaped Austria as her husband did. Sadly dying at 43 was her fate. It was the fate of Ronald Lauder to be born into fortune lead the life of a laudable man much admired, who is the owner of the painting of Adele Bloch-Bauer. Fate.

I admired the Egon Schiele drawings I had seen there years earlier. There were eleven exhibited in this show. He was a protégé of Gustave Klimpt, and a major figurative painter of the early 20th century. His work is noted for its intensity and its raw sexuality. The twisted body shapes and the expressive line that characterize Schiele paintings and drawings mark the artist as an early exponent of Expressionism. Schiele produced a large body of work before his untimely death in the autumn of 1918, in the Spanish flu pandemic that claimed more than 20,000,000 lives in Europe reaching Vienna. His wife Edith, who was six months pregnant, succumbed to the disease three days before he did. He was only 28 years old. He managed to make no less than 240 self portraits during his brief lifetime.

The exhibit is called from Schiele to Beckmann, and is devoted to the self portrait, focusing on German and Austrian art between 1900 and 1940, the first four decades of the Twentieth century, when the self portrait reached new heights. While I was moved  by the intensity of German and Austrian Expressionism, before I became ill, I wasn’t prepared for how vulnerable I was seeing these works that day. What I encountered was the visual scream of each artist living through a tumultuous and terrifying time. Although direct references to the First World War in the self portraits are few, the facial expressions and eye contact depicted in these works all testify to the face of battle and the emotional struggle these artists endured. What I saw was the expression of unbridled fear and panic. For me the inclusion of five masterful Rembrandt etchings and a copy of a Durer painting provided a small buffer to what I felt was the intensity of works by the Expressionists.

An especially poignant self-portrait by Felix Nussbaum, Self-Portrait with Jewish Identity Card (ca. 1943), depicts the artist’s experience in a harried, hopeless situation. His coat collar turned up and his Star of David visible, Nussbaum is showing his identity card, upon which his name and signature are visible, as is the ID photograph. The indication of his birthplace, Osnabrück, is blurry; his nationality is given as “sans” (none). “Juif-Jood” in capital letters is stamped diagonally across his passport. Nussbaum continued to paint self-portraits that depict his experience as a persecuted Jew until shortly before he was arrested and deported to Auschwitz concentration camp, where he was murdered in August 1944.

In the following weeks after my fall, I mostly remained indoors. Walking was reduced to a very few blocks, but when I did finally venture to go further, and took my usual route one day with Theresa, my part time companion, I ran into a group of my former colleagues, who were returning from a school graduation party. When I saw them in the distance I wanted to run away and not confront having to speak with them, but it was too late. So shattered is my confidence. There was Jeff Gould, the history teacher, greeting me and calling out my name. He knows I have this disease and has written to me. The others apparently did not know. There was Elena Soulier, the Latin teacher who used to regale us in the teachers room with stories of having been a spy in her youth in Russia. At over seventy she looked so strong and healthy. Standing in front of her I felt so withered. Ritsuko Yakota, the Japanese teacher, who I had been friends with, stood by her side. I hugged her, and told her about my sad plight. She knew about this disease and told me a neighbor of her mother’s in Japan, a doctor has it, and his wife is his caregiver. Then along came Randi Roberts, who had been my student, and was now a teacher at the school. Randi used to have so much respect for me. I influenced her study of art history, and she pursued graduate study in this subject at Sotheby’s in London. Years ago she wrote a wonderful  article about me and my film work for a local magazine. Now all I could see in her face as I told her about my diagnosis was reticence, embarrassment and pity. I asked her if she wanted to read my blog and she entered her email address on my iPhone, and I sent it to her. I have no idea if she has bothered to read it, or if she will see this, but if she does, I want her to know that the disease has caused my decline and I am still here inside this broken brain and body fighting it, even while it affects everything and makes me seem odd.  It has caused me to lose my confidence and stripped me of my strength. It is tragic and no one deserves to have this happen to them. I want to be remembered for the good I did, the positive influence I had. As they walked away I realized the thing I feared most was them seeing me in this condition. I feared stumbling over my words or stuttering. I was afraid of them seeing how changed my appearance is. Theresa quickly commended me for how well I handled myself, and we continued walking.

There are two rabbis that I hold dear to me. One is in Poland and one lives in my city and visits me in my home, and welcomes me when I am able to make it to a service. The last time he came here, I asked him to take me for a walk. The usual route through the park and up to the viaduct and back. We spoke and he told me that during the time a person says Kaddish for a departed loved one (eleven months and twelve months if the person had committed many misdeeds), the soul of the departed is undergoing a cleansing. This period of cleansing prepares the soul to dwell with G-d. My children don’t know this, and I am writing it here to ask them and to ask my husband to please recite the Kaddish for me when I die. I ask that my two dear friends, the rabbi in Poland and the one who lives in my city and visits me, recite Kaddish for me after I die. I ask Jackie my dear friend to recite Kaddish for me after I die.  I wish to dwell with G-d and for my soul to be cleansed. https://www.ou.org/torah/halacha/dalet-amot-of-halacha/the-kaddish/

I thought about writing a letter to my grandchildren, Ellie, Michael, and Sara, and sending it to their dad (my son) and mom asking to give it to them to read when they turn eighteen. I want them to know how much I love them, and I am so sorry that I became sick with a disease that has stolen me from being the grandma I wished to be. If I were healthy I would have been that grandma who would have taken them places, who would have introduced them to art museums and theater, and bought them beautiful clothes, and sang with them and showered them with love. I want Ellie to know how proud of her I am, how delightful she is. I know she will be a great woman. I want them to know that they have a wonderful aunt. She will be there to cherish them with love. I’ve seen it already, and thank her for cherishing ways. I want their dad to tell them about our family and to remember me to his children. In the end love is all there is.

DREAMING

I’ve been having weird dreams that wake me up. They are sometimes scary as I feel and know that these are signs that I am dying. My deceased parents keep appearing. I am not well, and there are many signs that co-mordid diseases are seriously affecting my body now along with Alzheimer’s. I’ve been getting pretty weak. I can’t travel alone as I did a year ago. Walking is getting harder. Speaking is getting harder. Eating and swallowing is getting harder. I don’t even think my body wants food anymore, When natural thirst and hunger go that is a sign that the body is failing. I do not want to be around to the end of the stages of Alzheimer’s, and being in the middle stages now, I would be grateful to not progress until the end, because I’ve seen it, and it’s horrible, and I don’t want to go through that and don’t want my husband or children to be burdened with that. I don’t want to be bed bound, or in a wheelchair unable to walk, unable to speak, incontinent, unable to feed myself. That’s where Alzheimer’s goes, and I don’t want to be cared for by strangers in a nursing home. I want G-d to take me before that happens.

In one dream my late father was in my home and his personality was intact but his face looked the way it did before he died. He had cardiac arrest and was on a respirator for two days when he died. His eyes showed that his brain was dead and the machines were keeping his body alive.  it was horrible seeing him like that, but he had previously told me to ask for all heroic methods to keep him alive, so when he went into cardiac arrest and the doctor asked if I wanted them to do CPR on him, I said yes. I regret that now, because his heart had stopped and it would have been more peaceful to just let him go. But that’s what he wanted and I wanted to comply with his wishes. In the dream his soul spoke to me as the dad he was. He seemed to be coming for me, to accompany me home. My late mother was trying to get in my front door. She was frantic as she often was in the later stages of her dementia, fearful and crazed. I didn’t want to let her in. In another dream a strange man got into my house. I was scared. I had no way of preventing his access. I don’t know who he was. I forced myself awake just as he came near me.

I wrote down this dream dated June 10, 2019.

Dreamt I was riding in the back of a car. My father, Michael, was riding in another car to my right, also sitting in the back (going in the same direction). My mother, Sonia, was riding also in the back seat of another car, to my left. Yet despite being in three different vehicles we were able to talk and communicate. I told them their old friend Zoshe (Sophie) Apolet, their friend who survived Auschwitz, that I always liked, was being released from Auschwitz because it was found that the other prisoners were beating her horrendously. I told them she was living with one or both of her daughters. My father said he was not sure if that was better than being in Auschwitz. I turned to him and and asked him if he was serious. My mother was silent.

Freud would have had a field day with that dream.