Rosh Hashanah has arrived, and it’s 5779 in the Jewish calendar. A lot has happened since last year at this time, but because of progression of my Alzheimer’s, I do not remember everything. I take lots of photographs and remember what was happening when I took them. This helps me remember more and helps me remember what happened in certain months. I looked at photographs from September of last year, and thought about what I felt like around Rosh Hashanah last year. I had resigned from my position as chair of the art and art history department. I was very sad. I didn’t know what having Alzheimer’s would be like as I progressed and I knew that the disease is about progression. I had just started the blog. I was researching and researching. I was already having problems getting dressed. My dementia mentor Laurie suggested I put my clothes on a hanger the night before. I remember that I was very lonely. I spent the entire summer in my house. I hardly went out. My son and his wife and our baby granddaughter visited and we drove to their home a few times. My daughter slept over a few times. My husband did not understand my lack of motivation. All of my friends had abandoned me when the diagnosis of Alzheimer’s was made. People I used to spend a lot of time with disappeared. I had few places to go and going to synagogue was an attempt to reconnect, to rejoin the community. I knew I would be telling people I have this disease. I didn’t know what to expect. Would I be rejected by the Jewish community? How would I as a person with impairments be able to interact? I told my former film editor, Harry. He confided in me that his late father had had Alzheimer’s in his 70’s. He began visiting me and suggested I get a home health aide.
I do remember that last year at this time, I met Jeanne in the park as I was on route to the synagogue to observe this holiday. I was sitting on a bench, a little exhausted from pushing myself to go. She and I were only acquaintances then. She had donated to my campaign to raise funds for my Holocaust film documentary Back to Gombin (which Harry had edited), many years ago and I never forgot that. I knew intrinsically that she is a good person. She believed in my work then and as she walked past me in the park, I called out to her. We walked together, and I told her I wasn’t well. I didn’t tell her that I had been diagnosed with Alzheimer’s at that time. She told me she had also not been well. That was beginning of our relationship, although I don’t remember if I told her I had Alzheimer’s that night. I do remember she walked me home. By November, Jeanne was visiting me once a week and bringing lunch. She told me about her own mother who had had a stroke in her mid 70’s, and who she said had dementia.
This past year I have experienced a slowing down of my brain and body. So much confusion. So much depression. Yet I’ve kept pushing myself. I have participated in many zoom chats with people who have been diagnosed with Lewy bodies, vascular dementia, fronto temperol lobar degeneration, and the very early signs of Alzheimer’s. I’ve noticed that I’m progressing quickly. It has been apparent to me that I am progressing faster than others with the disease. It’s been a terrifying year, a heroic year, a year in which I realize what the process of what people call The Long Goodbye is. Alzheimer’s is a cruel and tragic disease. It’s often referred to as the “Long Goodbye” because it doesn’t hit you all at once. You steadily fade away and, despite having the appearance of normalcy to the outside world, your mind is being ravaged by this awful disease.
I try very hard to fight this unbeatable foe. I know that it’s a losing battle, but for the sake of my dignity, I do what I can to keep pushing, stay socially connected and write this blog. I can’t believe that I, who was so involved with memory in my work as a filmmaker, is living a disease in which my memory is being dismantled and erased. My film Back to Gombin is a part of my legacy and I want to be remembered remembering history https://vimeo.com/124443430
The drawing was made after Ruth (Jeanne’s sister who has been spending many days and nights with me since May) and I went up to Steven’s Institute’s campus last Tuesday, both of us pushing ourselves up the hill on 8th Street near my home, she with her walker, and me trudging and a bit unbalanced. Upon the sprawling campus that overlooks the Manhattan waterfront, is a larger than life sized sculpture by Anna Hyatt Huntington called The Torch Bearers. It shows a dying man giving a torch (symbol of knowledge) to a young man on a horse, representing the transmission of Western culture and civilization through history. For me, the metaphor is that I am transmitting my knowledge, my torch, as it were, by writing about my experiences as I live through this long goodbye.
Last year it was not hard to climb this hill. I would do it by myself. Last year I was much stronger. Physically stronger. My cognition has changed along with my strength. Last year, I was able to hold a thought and wrote the blog in a linear manner. One subject followed by lots of insights and memories. Now I see that I flit around between the past and the present. Like the tasks I am unable to complete, my mind is having trouble finding an anchor. But anchor myself I must. Back to the present, at least the days around the present time. Rosh Hashanah 5779, September 2018. The present remains the anchor, lest I fall off the cliff and remain in the past.
This past Sunday September 9, Jeanne arranged to take me to the synagogue for Erev Rosh Hashanah, the Jewish New Year. She is a member of the chorus, and I sat next to her, as members of the synagogue commemorated this time in which one year passes to the next. The rabbi spoke eloquently as the sun began to set. He said it was not officially 5779 until sundown- that we were in the twilight time where one year passes from one to the next. I experience what is called sundowning when the sun sets and utter darkness appears. I get agitated and sometimes need to pace. I sat there and watched through the open windows as it got darker. The chorus sang Hebrew songs. I tried to appear socially normal, but inside I felt awkward and unsettled. I tried to joke with a man, a legal scholar I know, who has written about stopping eating and drinking to hasten death, in cases of dementia. Several people I know came up to me and said hello. I recognized all of them and remembered their names. Jaeli, a former student reminded me that she had studied art history with me as a 10th grader. I didn’t remember that. She was older but still childlike, a certain blush of youth fading in her face at 17. Everyone changes incrementally as they age, but it’s most evident when children are turning into adults. I saw the mother of another former student. Her name is Samantha and she’s a woman who has been a dancer, who I’d had many conversations with over the years. I said hello, and sensed a great reticence in her to even speak to me. It made me sad. I wanted to go over to her and say, I’m still the same person, sort of. Don’t treat me differently. A lot of people are afraid of Alzheimer’s. They don’t know how to deal with someone who has it that is suddenly somewhat different than the person they used to know.
For me simply showing up, getting there that night was a big deal. It was raining, and Jeanne and I walked home under umbrellas after the service. I have been reluctant to go out in the rain. The experience of getting wet, getting water on my glasses, pushing myself to walk distances, had to be overcome that night. We passed a dog with one hind leg missing. He gave me some inspiration to plod through it. The experience of walking has changed and I am definitely getting weaker. I am pushing myself. My rapid physical decline is startling to me.
I didn’t think I could do it, but the next day (yesterday which was Monday Sept. 10), I asked Ruth to walk with me to hear the shofar blow at synagogue and to accompany me to the waterfront where the rabbi conducted a service for Tashlich. On the first day of Rosh Hashanah, Jews traditionally proceed to a body of running water, preferably one containing fish, and symbolically cast off their sins. The ceremony includes reading the source passage for the practice, the last verses from the prophet Micah (7:19), “He will take us back in love; He will cover up our iniquities. You will cast all their sins into the depths of the sea.” It was important to me hear the shofar blow and I knew that this was the only day on Rosh Hashanah I would be able to hear it. Ruth who was born a Jew, with a Jewish mother and father, and years of Hebrew school, is now a practicing Jehovah’s Witness. She would not come inside the building and would not come upstairs to the sanctuary. I was concerned that I would have no one to sit with, but Louise, who I’ve known for years, sat next to me and offered me the Mahzor, the prayer book used on the High Holy days, Rosh Hashanah and Yom Kippur. There is always help within the sanctuary. There is always someone to assist. After the service, I met Ruth downstairs, and opened my umbrella, and we followed the rabbi and the group of congregants to the waterfront, Pier A. The mayor who is a Sufi was there grandstanding, and it started to rain harder. The rabbi directed us to stand under a pavilion nearer to the river, and he started to tell a story about a the land of Eden and likened it to the town we are living in. Then he recited the prayers for Tashlich and I took the bread from the plastic bag and crumpled it and threw it into the Hudson river. I wanted to throw away my sins. I know that my illness has impacted my husband, and my children. My behavior and unfiltered things I’ve said have been hurtful. There are stains on my carpet from the time my husband spilled his coffee during a particularly bad fight. I wanted to throw away the sins, not just mine, but all the bad thoughts I’ve harbored. A year ago I thought of throwing myself in this river. Drowning myself so that I don’t have to live through the stages of this disease. Now I was casting bread on the water. Throwing away my sins in the form of crumpled slices of whole wheat bread. Birds flew and swooped down and ate it. If my faith was restored, it was in seeing the continuity of life. I realize that my faith comes from within. The rituals are reminders that G-d is with me. That’s why I needed to hear the sound of the shofar, to throw bread on the water. To hear the sweet sounds of Hebrew prayers, to read the words in the Mahzor. We are all just passing through life. We are all living in the bosom of G-d. I wonder why some souls have to suffer more than others. I’ve pondered if it’s been my karma to suffer more. Some souls are like asteroids or meteors, burning brightly as they sparked the sky briefly. I’ve been so angry that my time is passed, that this disease will rob me and my family of so many years of togetherness, that my very being has become a burden on them. And then I see that there is still a life to be lived, and stories to tell. I am not gone yet. It’s Rosh Hashanah 5779 and I’ve made it so far. Not whole, but holy.
Ruth and I made our way back, walking from Pier A down the path I used to ride my bike on, in the days when I was so strong and able. For a moment I was disoriented, confused about how to get back home, but it came back to me that we should just walk to the end of the path (about 4 long blocks) and it would take us to 4th Street where we would cross the street and walk a block up, cross again, and walk through Stevens park, and then up to Hudson Street. We walked up Hudson Street and took a left on 8th street and waited for the light to get across Washington street and down the hill on 8th street and reached my house. Inside I took off my rain coat and hung up my wet umbrella and sorted out my purse which I always hang up on the hook of the etager with a mirror, and took out my phone, which I try to always have with me. The meal my husband left for me was sitting on the kitchen island. He was not home, having gone to his appointment with the physical therapist. He refused to go with me to the synagogue, despite my pleas that this might be the last time I was able to attend for Rosh Hashanah. Although he’s a Jew he’s an atheist or agnostic and has rarely been inclined to go with me to shul, even when I was well. I usually went by myself. but I felt this was a time when he should have gone with me. He has removed himself from me in so many ways since this disease has changed me. This is why Ruth came with me although it was odd that she wouldn’t come inside. I have to forgive her. It’s the imperative of the individual to make their own choices. I have to forgive him. I do not want to plummet into the cycle of sinful and angry thoughts. I am alone with this disease, but I have support. He can only do what he does. I will aim for peace no matter what. It does no good being angry. I’ve said it before and will say it again. This is a time to let go. Love will prevail if I am able to stay seated in my faith that G-d will carry me home.