Double self portrait with Cuckoo Dec. 2017 Minna Packer
The weekend: I was snowed in at home in my East coast abode. I spent my time drawing the double self portrait with a cuckoo bird, the phone silent, my husband weary and resting, and me reading the The New York Times news feed, eating, playing Lumosity and Brain HQ games and trying my hand at the Times crossword puzzle.
It doesn’t sound out of the ordinary for anyone’s weekend activities. That’s why it’s called the weekend. For me though the comfort of familiarity and routines in my life are changed. Instead of a job teaching students about art, I am home alone so much of the time. Having this disease has cut me off from the world I knew. A normal routine, punctuated by time with friends, going to films, traveling, community involvement– a life. A normal life which is something it seems I will never experience again. I didn’t choose retirement. I thought I would never retire. A life at home with a list I write the night before, telling me to eat, get dressed, take my medication, take a walk, is not what normal person imagines will be their construct in late middle age. It’s absolutely bizarre, yet without my list, I don’t remember what I should do. I get confused. I have to enforce a routine and I do it with a list. This is my new normal.
The people in my life who were present every day are gone, colleagues, friends, extended family are replaced now by social workers, psychologists, a cognitive remediation counselor, visits to the neurologist, doctors, and a hired companion who helps me to complete household tasks. The occasional visits from and to see my adult children are “events”. My beleaguered husband who works full time and takes care of my nutrition, doctors appointments, and manages our household is my mainstay who keeps me going. He cues me to get out of bed and helps me when things like walking down the stairs are hard to do. I’m alone with my husband four days a week. He works remotely on his computer two of these days. He is a loner and doesn’t bring social contact into our lives. I was a sociable person, and as much as Zoom chats with my dementia mentor are awesome and I adore her, it’s once a week for an hour. Dementia Alliance International is great source of support, but again Zoom chats once a week, often at a time when I’ve had appointments, are not enough to cut through the isolation I am experiencing. Sometimes these Zoom chats make me feel like I’m a dementia patient on the Starship Enterprise using communicator panels to connect with those who are light years away. I think anyone would become stir crazy if forced into this sort of isolation.
I read the news and see that I am one of the fortunate ones with a roof over over my head and food in the fridge. Global warming is affecting everyone and everything, but for the moment, I am safe. The fires are continuing to burn after those in Sonoma and Napa counties have destroyed 14,000 homes with losses topping $3 billion. Now fires continue to rage from Ventura to San Diego. More than 100,000 people ordered to flee their homes! One human death reported yesterday, two the day before, dozens of horses killed. This at the heels of 42 dead in Sonoma County. Valiant firefighters battle to contain the flames that has destroyed over 245,000 acres.
Reading the news makes human tragedy just that, readable. Isolated in a world where we are exposed to news events every minute of every day, it becomes more challenging to give a single story the attention it deserves. The sheer number of environmental disasters, competing with social events happening at one time, alters our ability to feel fully compassionate towards a single event. We’re so drowned in data that we’ve become numb.
On the same electronic page with the report about the fires, are advertisements for a child’s luxurious colored crochet blanket in the shape of a mermaid. This makes me better able to understand how the artist Andy Warhol visually depicted how everything in our culture is reduced to banality. The same page that delivers the news of tragedy and devastation, delivers a luxury item for kids. Life and death trivialized in a barrage of data.
Another news feed: Trump’s incendiary move to announce that he recognizes Jerusalem as the capital of Israel, and will move the U.S. embassy there, is expected to inflame tensions in the region and unsettle the prospects for peace. Jerusalem is braced for it’s it’s most serious flare-ups of violence in years.
Jerusalem: I was there in March 2014, asked to speak at Jerusalem University, about the film I was making, “The Lilliput”, about a dwarf who hid in garbage cans during the Holocaust and survived https://vimeo.com/91234297. I was with Ada Holtzman, a prominent genealogist, a few years older than me, who compiled the records of those who perished from our late father’s shtetl (town) in Poland. This is the plenary website she created to honor the memories of those who lived to tell their stories and about those who perished http://www.zchor.org/indexgom.htm. We walked through the old city, and had a such a lovely time, enjoying a mid afternoon lunch. We hadn’t seen each other in six years, but had communicated regularly by email. Two years later this woman who was so full of energy, and passionate about her work, is dead from lung cancer that spread to her brain. Here I am alive with a head full of Alzheimers pathology and a changed brain that makes daily life a challenge. I miss her. I miss myself, the self I was that afternoon.
A text pops up on my phone. It’s a daily text from a Christian woman who urges me daily to pray and have faith. She quotes from Psalm 17:6 telling me that G-d can quickly change things in my life and my situation. I consider the brightness of her urging. There are blessings in my life. There are many things I am thankful for. I am not being sarcastic when I say that my iPhone which brings me her message to hang in and have faith, and my Mac computer to write my blog on, and connect with my dementia buddies on Zoom chat, is a blessing. Thank you G-d for creating Steve Jobs, who lived to make this happen. Six degrees of separation.
I turn back to the newsfeed.
The sex scandals continue to spark with allegations made against the most powerful men in the land, in various industries. The list keeps growing. Republican Alabama Senate nominee, Roy S. Moore, is alleged to have molested teenage girls. From the most prominent liberal minded Democrats to ultra conservative Republicans, former American presidents, members of the U.S. Senate and U.S. House of Representatives, celebrity actors, celebrity chefs, billionaire movie executives, directors and producers, US judges, political journalists, chief news editors, musical directors, lauded talk show hosts, famed fashion photographers, world famous comedians, playwrights, CEO’s, pop stars, NFL quarterbacks, soccer stars, venture capitalists, hotelier’s, rappers, and even a famed magician. The most influential and wealthiest men are toppled because they believed themselves to be more powerful than others, perversely pleasuring themselves by degrading women under the radar of the public eye. Will this be a clarion call for women to replace men in positions of power and influence in every facet of public life?
I know that we plan and imagine our lives going one way, and things go another way.
Loss as muse.
Loss as character.
Loss as life.
And yet…I remember that without dreams and hope life is dismal. I give myself permission to mourn my losses, but I also encourage myself to remain an active participant, a part of the world. I am hoping to meet my dementia buddies in Chicago next year for a dementia convention. I want to be able to be able to start a support group for those with early onset in my own community. Told by the co-director of the local Alzheimer’s organization that she hoped to start such a group at the local hospital, I see now that this will not happen unless someone with the disease makes the effort to reach out directly and find ways to facilitate these connections. She told me the only two people she knew who were close to my age and were diagnosed, were so afraid of the prevailing stigma, that they would not reveal themselves. Her organization has 3 support groups for caregivers, and nothing for those who have been diagnosed. That needs to change. I want to be able to speak to people about living with the disease while I can. These are dreams I’m holding onto.
In the meantime, social activity for me now involves organized trips to museums with programs for people with dementia. Programs tailored to those with cognitive disabilities is where I am able to bring forth my best self now. I engage with the caregivers if the person with dementia can’t speak. I stand at a juncture between them, and it’s my point of reference. Last Thursday I attended a program hosted by The Museum of Modern Art in New York at the hospital where my neurologist practices. The presenter was a young woman who showed us images by Andy Warhol, Phillip Guston- one of my favorite painters, images of hanging works in wire that are called drawings in space by a woman artist whose name I don’t remember, a painting by Cy Twombley from an installation now at MOMA, called the “The Four Seasons”, and a body print from the sixties by David Hammons, an African American artist now in mid late career. She wasn’t surprised that I knew so much about the artists and their work when I told her that I had taught art history and grew up in the art world, had owned a gallery in SoHo, and that this was the world I used to swim in.
People often say, you can’t possibly have Alzheimer’s, because you speak so well. “You’re so articulate”. “You write so eloquently”. The ideas people have about those with dementia is misconstrued. Some of us have more depression, some more anxiety, some lose abilities (activities of daily living) faster than others, some have hallucinations, some progress and plateau for a while, some progress quickly, some become incontinent and have to wear Depends (as is the case for a prominent writer who just published the second edition of his book about living with early Alzheimer’s!), some get locked up in psychiatric hospitals and are drugged and stumble around muttering to themselves. The bizarre combinations of symptoms in some people with the disease is startling and alarming. Here I can write a blog, but have a lot of trouble following a recipe, getting dressed and traveling alone, because I become disoriented and have a lot of fear about getting lost. The early stages are deceiving to those who do not understand that we process things differently, can’t think as fast as we used to, thus our reactions are slower, we need to plan and prepare well for everything we do.
Art is my respite. Here are 2 images from the discussion about contemporary art I attended on Thursday. This is a painting by the late Phillip Guston, titled “In the Studio”, 1975.
In a career of constant struggle and evolution, he emerged first in the 1930s as a social realist painter of murals in the 1930s. Much later he also evolved a unique and highly influential style of cartoon realism.
One of the things I love about Guston,’ says Philip Dodd, head of London’s Institute of Contemporary Art, ‘is that he was not afraid of vulgarity. Once he leaves abstraction behind, he ceases to be a tasteful painter, in fact in his late work he is willfully tasteless, but this was not a man who would do anything as obvious as setting out to shock. He understood that he had to make a new kind of art that was about flesh as meat and meat as flesh. I can’t think of any other artist who is so cerebral and so cartoonish.’
Body print by David Hammons, 1969
Although Hammons is known for his ephemeral objects and short-term installations, often on themes related to African-American life, his early work took the more concrete form of one-of-a-kind prints based on impressions he made of his own body. To make this image, one side of his body was covered with oil and sprinkled with pigment, then he laid down on a huge piece of paper and left his imprint.
Looks like he’s praying.
Finally, a quote from Steve Jobs, who enabled me to communicate with you on this device.
“Almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important.”