I am making this phrase, The Cardinal Truth, my own. I do not mean the cardinal truth as a symbol of the four virtues – which were recognized in classical antiquity and traditional Christian antiquity – temperance, courage, prudence and justice. I mean to refer to the idea that we must walk in spirit in all things, and listen with our spirit to all things.
My husband spotted a cardinal, and called out to me to come and see him. I thought about the robin that kept visiting my backyard this past summer and in the early fall, that I believed was a visitation from my father. A sign that there is more to our world and existence than we know. Then my husband saw the cardinal, and I saw him again sitting in a tree the next day. I felt the presence of my father. My father who died in August 2006. My father who I have been angry with because I felt he abandoned me in favor of my sister. He had Parkinson’s disease and had become mean to me. Nothing I said to him would soften him. I think he may have had dementia from the Parkinson’s and all the medication he was taking. I am learning to forgive him.
Seeing the cardinal felt like he had not abandoned me. The message I was receiving was that he will be there on the other side. The message was that he still loves me and understands that this is the hardest and and most treacherous disease, and that he sees how brave I have been. I am brave! I’m 64 years old, almost 65. No one should ever get this disease, but getting it at a younger age is particularly ruthless. It’s not like I have had the chance to complete the things I wanted to do. My daughter was in her early twenties when this started. The disease has progressed quickly. It’s unfair. (Life is not fair or equitable when it comes to Alzheimer’s either. Neil Simon, the famous playwright, died with Alzheimer’s at age 91, but he had led an incredibly productive, creative and successful long life. I was still in the middle or end of the middle, or so I thought).
I am having many physical symptoms now, and they are not related to cognition. If this disease was about how well one scores on the MOCA or State Mini Mental Exam, I would not be deemed to have it. I score 29 out of 30. I can still do many math equations and can count backwards from 100 by 7. But getting out bed and getting through each day requires support and reminders and pushing myself through each task. I literally have to find the courage to make mistakes doing the simplest things now. Like chew my food and swallow. Wash dishes. Put on my coat and zip it, making sure I have my eyeglasses on, my purse and phone and keys, and go outside and walk to my friend Ruth’s apartment. It is insane how hard things have become. So the cardinal visiting reminded me how brave I am, and I want to believe there is a spiritual dimension to all this suffering. I want to believe that my father is there and visits me.
That’s likely dementia, but how can I know for sure? Maybe there are things that science can’t explain. Why I felt his presence and connection.
A trip to the library
Unbelievable really how a simple walk outside is such a big deal now. The library is a half mile away. It’s across the street from Church Square Park and a local site I would often go to with my kids and my students, and by myself. It’s a block from the school where I was the chair of the art and art history department. Today my husband suggested we go there. We passed the Episcopal church where Christmas trees are being sold in front, as they do every year. It made me realize that last year at this time my husband took me there on one of our walks. I understood by how I feel now, how my walking is affected, and how my speech is altered, that there has been significant progression in a year. It made me understand how debilitating this disease is and how much fortitude it takes to keep going. Last year we went inside and I marveled at the stained glass windows I had never seen from inside. I remembered how I felt then. There were no physical changes then that I was aware of, except for the difficulty getting out of bed and getting dressed. I was not aware that walking was difficult then. I certainly had not begun to have changes in the way I spoke. Certainly didn’t speak nonsensically or jumble up my sentences or talk to myself, instructing myself the order of steps in getting dressed and groomed. I didn’t have trouble chewing and swallowing then. We passed the sign TREES and I snapped a photo.
The library is on 5th Street. Make a left and cross Willow Ave, go past the building where my friend Zehava lives, and it’s there.
My husband suggested we go upstairs. First the steps up to the door were a challenge. Once inside he suggested we go up to the second floor. Climbing those stairs required holding the bannister and pulling myself up.
First thing we saw on the second floor was a student art exhibit from a local charter school. Looked sort of like the kind of installation I would prepare when I set up local exhibits of student work. Sadly it reminds me of what I can no longer do. I had to retire in June 2017, after pushing myself to keep going that term. I didn’t want to, but I could no longer do the work with the students, for so many reasons. I caught a glimpse of an artwork by the brother of a student I worked with privately around the time my mind started to scatter. Not a big surprise that Leo is talented and imaginative, as his sister Grace was. His detailed and funny illustration of freaks and geeks in some kind of extraterrestrial room, goes beyond the rudimentary examples around him made by other students. I recognized his last name and the grade he is in and realized it has been 3 and 1/2 years since I recognized the symptoms of this disease. Grace was studying privately with me in July 2015, and my mind was starting to jumble then. I remember.
Then we into a large room with historical memorabilia. I saw an image by the American painter, Thomas Hart Benton, whose work I would show my students, and The Oxbow, by Thomas Cole, who was the founder of the Hudson River School of painters. I used to use The Oxbow as an example of painting landscape in deep perspective.
Anyone who knows about Hoboken history, knows that Frank Sinatra was born here and grew up here. The rest of the room is dedicated to Sinatra. Photographs of his early years line the walls, and a life size cardboard Sinatra stands in a corner. I immediately recognized Bing Crosby in the photo with Frank. The street along the Hudson River is named Sinatra Drive.
I’m realizing that my writing and photographs are becoming like a show and tell. I wonder what cognitive age this resembles. Am I like a 12 year old adult, maybe a 10 year old, by todays standards, maybe 8. I understand that this is intellectual regression. I still want to share and communicate, but I am now more limited, and it’s using the skills I still retain to show and tell. I hope it isn’t tediously boring. I’d much rather be writing imaginative stories, but my reach into the world of imagination is pretty spotty at best. I can still follow a storyline, and choose great movies and series to watch on TV. My ability to delve into a place that is imaginative where I could express something original and creative is limited to the few dreams I still have. A recent one I remember- I was in my daughters apartment, and her boyfriend was going to take me to the subway so I could get home from Brooklyn. I told him that I didn’t think I should take the subway, and to call an Uber. As we were walking to the door, I looked into the bedroom where my daughter was sitting on the bed. Her boyfriend dressed differently was walking into the bedroom. He was both walking me to the door, and also walking into the bedroom. There was TWO of him. I have read that in Lewy bodies dementia, people sometimes see two of the same person– but in a dream!!!? Maybe I have Lewy bodies too.
I think my frontal lobes are damaged. I am not able to think of a plot, details, a storyline. I used to. I used to write stories all the time. I’ve read that these come from the frontal lobes. The creative sweet spot. My sweet spot is gone.
We walked down to the room that contains masses of CD’s and DVD’s. My husband went to the front desk to renew his library card, at my suggestion. I looked at covers of the CD’s and spotted one by Sade. I snapped a photo of it and texted it to my daughter, saying remember her? She wrote back, Of course. Soundtrack of my childhood.
I wanted to go home by this point. The library was hot and stuffy. We stepped outside and I snapped a photo of the park across the street. This is the park I would so effortlessly ride my bike through on route to the PATH train, where I’d lock it up and take the train. The park where I’d accompany students on their breaks. The park where Marlon Brando and Eva Marie Saint shot their famous love scene in the movie, On The Waterfront.
I’d walk through it every day for many years. Now just seeing it is a kind of Alzheimer’s Disneyland for me, as I stay inside so much.
We walked along Park Avenue and passed the school where I used teach. The lights were on the fourth floor art room where I used to teach. I have not heard from any of the faculty I was friends with for so many years. I assume they must know I have Alzheimer’s, since I did tell one colleague when I resigned. I’ve contemplated writing to some of them and telling them, but what would they say? So sorry to hear that. Is there anything I can do? Well… it would be nice to see your face again. Maybe you can stop by when I’m finally dressed, groomed and ready, some afternoon? I think it might shock them, and what happens if I start babbling something incoherent? That would be extremely embarrassing. And of course, I would be hurt if they didn’t offer to come and see me. A woman whose sons were my students, and who I recommended to the board of trustees of the school, had a mom who had later onset Alzheimer’s. I’ve considered writing to her, and asking her to write something about Alzheimer’s and my years of dedicated service as a great teacher and chair of the department. Make people aware of this disease. De – stigmatize it. But I know better, despite putting this on my to-do list every day. As soon as people hear the word Alzheimer’s, it strikes fear into their hearts and minds. Almost everyone I’ve told has disappeared. Even people who used to visit from the synagogue have taken a hike. So I have disappeared and am invisible to these people I knew and worked with for twenty years. Is this withdrawal or caution?