Going places and remaining engaged is so important when one is losing their mind (what an odd sentence that is, and yet it is precisely my situation). But that too can get dicey. Recently I’ve had lapses when I’m outside, almost walking into places that are not where I’m intending to go (on route to the gym I almost walked into the bank which is next door to it; on my way back from a walk and trying to get to my therapists office, I turned to enter into the wrong door of a building on that street). I wish I would not sweat this stuff when it happens, because I do catch myself, but I become fraught with anxiety.  It’s not the full out not knowing where I am,or getting lost, as evidenced in the scene from “Still Alice”, when Julianne Moore stops while running a familiar route through Central Park and doesn’t know where she is, as she stands in front of what should be the familiar buildings near Columbia University where she worked as a professor for decades. I do not want to allow this to stop me. I do have a new companion who makes sure I don’t get lost, but she’s only with me a few days a week. There are times I am alone on the street, and I very much want to maintain some level of independence and be able to go out by myself. In my daydreams I am normal and active and navigating my way everywhere. This has been curtailed to almost zilch, and that is extremely depressing. So I push myself to get out and go, even if I need to be accompanied, as I do on trips to New York City.

Yesterday I had to push myself hard to get to the Rubin Museum for their wonderful program for people with dementia called Mindful Connections, which I’ve attended twice, and occurs on the 3rd Thursday of every month.  http://rubinmuseum.org/events/series/mindful-connections

This was my third visit and this time I went with Jill, who helps me several days a week to keep active, helps me complete tasks and recently to travel to the city. I was scared she might lose me, which turned out to be foolish. She sticks by my side. Her sensitivity and enthusiasm are a gift at a time when things are getting harder. Below are some highlights from the exhibits at Rubin that resonated with me. I was an artist, art historian and filmmaker, and I am still able to respond and understand and speak about art,  so I’m grateful for this program. This is a large piece by John Giorno, a New York poet and artist, who draws largely from his poetry. The work indexes his commitment to Tibetan Buddhist practice. Each painting can be read as a mantra, which, when repeated, has the potential to transform the reader’s mind and loosen the ego’s hold.

Christine Sun King is a deaf artist who uses musical notations, known as dynamics, which typically indicate the loudness of a note or phrase, as a metaphor for the behavioral dimension of sound. This allows the viewer to participate in the same mediated experience of sound that she does by de-familiarizing the process of hearing.

I’m impressed by this artists’ ability to take what is her sensory impairment, and make use of sound (probably through vibration), musical notation and translate this into drawing, to impart the experience of each note, and how she perceives sound visually. Here in “The Sound of Obsessing”, the notational P’s end up ganging up on themselves, the experience of obsessing conveyed in how it looks and sounds to her.

This is a photograph from the exhibit by Henri Cartier Bresson: India In Full Frame, which I’d explored in depth with my daughter when I came to the museum with her in August. This time the docents led us to this particular photo for a discussion on what we perceived. While many of the works focus on Bresson’s decisive moments of political unrest and change (for example, Mahatma Gandhi in Bombay (Mumbai) the day before his assassination, followed by witnesses to the ritual mourning), here our group was simply asked what this image of dancers conveyed to us personally. We were told the dancers were in the presence of their teacher. I noted the resemblance of the hand gestures to the iconography we had seen the previous months in paintings and sculptures of Himalayan art. These hand gestures called mudras convey meaning. I do not know how to decipher each of the mudras as the dancers gesture in front of their teacher. Instead I was struck by these animated gestures as reverence embodied by their hands and swaying bodies, in contrast to their teacher who sits erect but stiffly in the chair, his arms sagging onto the armrests, his fingers drooping downward. The contrast spoke to me of the vitality of youth and the stiffening and fading of old age.

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I was quite verbal and engaged in discussion. The docents were stunned that I have this disease, as to them it was in no way evident. I can walk and talk and engage with others. I can type and write sentences and attempt to convey meaning, as I am doing here. What is not apparent to others who meet me, is that I am not able to take care of myself. I have not been able to food shop, or prepare meals. I am not able to dress myself without preplanning the clothes I will wear the next day, and putting these on a hanger, which my husband now helps me bring downstairs to the bathroom, where I dress. It is not evident that getting out of bed and starting my day is incredibly hard, and fraught with confusion and anxiety. My legs are stiff and navigating the spiral stairs is getting harder. I have to create a written list list for each of the tasks I wish to accomplish each day. This includes taking medications and eating meals, which I forget to do unless I prompt myself to by referring to my list. Time is something I experience as passing only insofar as the day turns to night. I have found myself straining to write something meaningful, as the hours turn from day to night and day again. I am lonely and worried. My friends have disappeared, replaced by an assortment of folks I know as virtual buddies who also have neurological brain diseases and dysfunctions that range from mild to moderate. My professional life is gone. My husband, who is my caregiver, is not doing well at all. His health and energy are crushed under the burden of my care, and his need to continue to work and drive and take care of his wife, who can no longer take care of herself, is impacting heavily on him. I understand that this disease destroys others and I am doing my utmost to give him space and allow him to rest.

I wonder about the folks who showed up for yesterday’s tour and discussion, which included some who had attended previously. What are their lives really like on a daily basis. Once again, I saw Michael, the man who is close to my age in the wheelchair, who is not able to speak or walk, along with his amiable companion, Jaime. I went over to Michael and greeted him. He communicated with his eyes and alertness, simply glad I was saying hello directly to him. Like the last time he attempted to speak, but what came out was inaudible. He is completely dependent on Jaime who I imagine dresses, diapers, and feeds him with great care. There was a new guy, Steven, an older well dressed gentleman who was clearly well off. He had great clothes on, and was fully mobile and well mannered. Likely he is in his late seventies or eighties. His attractive caregiver/ home health aide sat slumped in a chair with earbuds in her ears, bored and unstimulated. Clearly he has some form of decline, as he isn’t able to care for himself and is escorted. But whatever he has, it does not appear to me to be dementia. Elaine arrived sitting in her wheelchair with the Elsa, her Polish caregiver, who attends to her needs. Well cared for, Elaine has a lot of anxiety and Elsa has a great deal of patience and fortitude. I wondered about Elaine, and how she manages the anxiety and how she sleeps. She appears well nourished, and I’m certain this is a result of Elsa’s abiding care.

I am worried about the daily decline I am witnessing in myself. I wonder if the cognitive meds I take are making me more confused and possibly making me worse. I;m on a low dose. It appears to me because I am relatively young to have this disease and my body is managing to withstand the stress, I will simply fade away and not know when it happens.

Yet for now….for the moment, I can appreciate the poet artist who counsels in his painting- IT’S NOT WHAT HAPPENS IT’S HOW YOU HANDLE IT.