A Better World

Suddenly Mad- A Better World (drawing of Michael, Ellie and Sara)

My grandchildren, February 2019

Welcome to my world.

How to see the brighter side? How to appreciate my part in this old world? Doing what I can still do. Not much, but it’s my contribution to a world of better understanding. Writing and drawing, and sharing my perspective on living is what I do here.

I retain a sense of worth though I struggle with this disease. A sense of worth and a perverse sense of humor. All the while knowing where this is headed.

I ask to be remembered for the best parts. I take an accounting. I was a great teacher. I loved my students and loved teaching art and art history and making films. I taught these subjects for twenty years. I was a Holocaust scholar, and an American Fulbright to Poland where I shared my knowledge and my own family history. I was always an artist. I had friends. They are all gone now. My friends. My cousin who laughed hysterically with me over great food and wine. Joyce.  Jody. Kamila (who still writes sometimes from Poland). Karen, Frank, Amy, Ben. Harry! Where are you Harry? I would love to see your smiling face. I adored them all.

I love. I loved.

My husband.

Our children.

My friends.

I laughed.

I am a mother and grandmother.

Three delicious adorable babies.

Theirs will be a better world.

*****

Laura Nyro the late great singer wrote and sang, And When I Die.

PLEASE listen to this.

And when I die and when I’m dead, dead and gone, 
there’ll be one child born and a world to carry on, to carry on.
I’m not scared of dying and I don’t really care. 
If it’s peace you find in dying, well, then let the time be near. 
If it’s peace you find in dying, when dying time is here, 
just bundle up my coffin cause it’s cold way down there, 
I hear that’s it’s cold way down there, yeah, crazy cold way down there. 
And when I die and when I’m gone, 
there’ll be one child born and a world to carry on, to carry on.
My troubles are many, they’re as deep as a well.
I can swear there ain’t no heaven but I pray there ain’t no hell. 
Swear there ain’t no heaven and pray there ain’t no hell, 
but I’ll never know by living, only my dying will tell, 
only my dying will tell, yeah, only my dying will tell. 
And when I die and when I’m gone, 
there’ll be one child born and a world to carry on, to carry on.
Give me my freedom for as long as I be.
All I ask of living is to have no chains on me. 
All I ask of living is to have no chains on me, 
and all I ask of dying is to go naturally, only want to go naturally.
Don’t want to go by the devil, don’t want to go by the demon, 
don’t want to go by Satan, don’t want to die uneasy,
just let me go naturally. 
And when I die and when I’m gone, 
there’ll be one child born, there’ll be one child born. 
When I die, there’ll be one child born.
When I die, there’ll be one child born.
When I die, there’ll be one child born.
When I die, there’ll be one child born.
Laura Nyro died at age 49 of ovarian cancer. The same age her mother died of the same disease. She had one son, Gil, who became a rapper.
I was a teenager when I fell in love with her music. I remember sitting in Bryna’s bedroom in her parents apartment near Yankee Stadium, belting out her songs accompanied by Nyro’s voice on the record player. Bryna’s mother sat in a wheelchair in the living room. The TV on, her father nearby. I didn’t understand tragedy then, and the feeling in Bryna’s home was still loving and accepting of her mother’s illness. I was told that Bryna’s mother eventually died in a nursing home. Her father remarried and died many years later. Bryna married Eli, a guy she loves very much, who I was told has Alzheimer’s. If he does have it, he is a very slow progresser as he’s had it for many years and when I look at photos of them now, they both look great and deeply in love.
*****

My body is slow to obey my commands. Telling myself to go faster when I can’t. The world around me an obstacle course.  Less than three years since diagnosis. I am a rapid progresser.

*****

An email friend who was diagnosed with Alzheimer’s in 2009 (slow progresser because that’s 10 years with this disease) writes me saying he has trouble finding the keys on his computer. He says he rehashes concepts. I have trouble thinking now! Where are my thoughts? Obliterated in a haze of confusion. I sometimes find myself looking at what I am doing, whether it is eating, or typing, or drawing, and forget what it is I am trying to do. Only by giving myself continual kicks in the proverbial butt do I get anything done at all. Crazy systems I call it. The clothes on the hanger the night before in order to get dressed the next day. Complete a drawing to indicate its time to write. The list I write every night before bed, to get through the tasks for the next day.  I do check off when I’ve taken the medications, eaten the banana, had the coffee, gotten dressed and groomed. Check, check, check. Having to do the same procedures over and over in order to remember what to do. To get through another day. Finally the day ends and my head hits the pillow, and with around five hours of sleep, I open my eyes, and it starts again. Rinse and repeat. Groundhog Day.

Each day it gets harder and anxiety looms large.

*****

So what is this better world? It’s a world without this disease. It’s the world of the future, I hope. One that I will not know, and that makes me sad. I’m a Baby Boomer who has Alzheimer’s disease, a disease with no cure, no treatment, no hope. A better world is one without this disease. Maybe a vaccine will be developed to eradicate it, as happened with polio.

A world without Alzheimer’s is a better world.

Greg, my email friend quotes Bugs Bunny, “Don’t take life too seriously. no one ever gets out alive”.

Sure, there’s no cure for death, but going like this is ridiculous! Losing my marbles before the game is over? In my sixties!!! And so fast. Yes it sucks, so my wish for the future is a better world where this disease does not exist. Where people don’t lose their minds before the game is over. Because too many people suffer. The ones with the disease and the ones who love and care for them.

*****

Many people who think of Alzheimer’s picture late stage, when a person can’t speak, walk or go to the bathroom themselves or do anything for themselves. Some who know very little about the disease (I was one of these before I came down with it) think that it’s about forgetting your keys or getting lost (this happens in the earlier stages). It’s a treacherous disease because it’s progressive, stealing abilities, thoughts, short-term and then long-term memory, physical abilities like taking a shower and getting dressed. Appetite goes, but one knows you have to eat and drink. But then chewing and swallowing food get harder. Emotionally it’s a roller coaster. I experience sheer terror, and have to calm myself many times a day, and especially at night. Some Alz people drop off the cliff early. I read about one man younger onset who was gone in 20 months. I find it hard to fathom that some progress slowly, as this has taken me down in less than three years, and I am still here and able to still do some things because I push myself. Routine keeps me going.

*****

The word dementia is an umbrella term that encompasses all the neurodegenerative brain diseases.  Wikipedia tells us dementia is a broad category of brain diseases that cause a long-term and often gradual decrease in the ability to think and remember that is great enough to affect a person’s daily functioning. Other common symptoms include emotional problems, difficulties with language, and a decrease in motivation. A person’s consciousness is usually not affected (that’s the rub, we are aware of what is happening to us). A dementia diagnosis requires a change from a person’s usual mental functioning and a greater decline than one would expect due to aging. These diseases also have a significant effect on a person’s caregivers.

*****

Everyone’s days are numbered, but in this disease there is no way of knowing how long it will last, and it would help to know for the sake of planning. I’ve arranged the Jewish funeral, and the plot. The wills have been drawn. Everything goes to my husband and kids. My husband is my power of attorney. I have a DNR. I do not want to be resuscitated. No heroic measures. When I am called home, please just let me go.

Some with younger onset go very fast. Three to five years. Some have nine to eleven years. Some hang in there for as long as fourteen years, (and I’ve heard twenty but that’s a stretch if it’s really Alzheimer’s) but in a completely demolished state, all their needs taken care of by others. Most of the disease is lived in the later stages. Dressed, spoon fed, diapered. Moved from the bed to the wheelchair by a hoist in the latest stage. Some go blind. I have days when I see double, and triple.

*****

I was diagnosed with probable Alzheimer’s disease twice. First in September 2016 at Columbia Presbyterian hospital in New York City through brain imaging called a Spect scan. It showed diminished blood flow to my temporal and parietal lobes. The neurologist James Noble, M.D. said he suspected my frontal lobe was already affected. Then a more sophisticated scan called an FDG Pet CT was ordered in February 2017 at NYU Pearl Barlow Center for Cognitive Neurology by Thomas Wiesniewski, M.D. which showed hypometabolism of my temporal and parietal lobes. Same pattern. The pattern of Alzheimer’s, a progressive neurodegenerative brain disease that is terminal.

It’s February 2019, two and half years since this saga began. The imaging was taken when I was already progressing, but not progressed to the point I am now. At that time getting dressed was not complicated. Taking showers was not something I complained about. I had stopped cooking and shopping, pretty much, but going to the supermarket or to a store was easy. I researched and read about the disease, thinking I could somehow handle it. I wanted to keep working, teaching. I still wanted to do and be all that I could be. Then as I tried to continue in my professional life, I saw that I was forgetting students names. I was not seeing things that were right in front of me. I was forgetting how to teach, having to write extensive notes for each step of a lesson, that I would refer to continuously while trying to teach. This was the beginning of the journey I am still on. It’s called The Forgetting, but as I progress in this strange and insidious disease, I have not forgotten those I love.

What would make a better world? A world without disease for one. A world without tragedy. A world without hatred. A world in which people truly accepted one another and took care of each other. We are a zillion miles from there and yet there is always hope.

*****

How about some irreverent humor?

Whew, finally some comic relief!

I saw a great film directed by Gus Van Sant called Don’t Worry, He Won’t Get Far on Foot. The star was Joaquin Phoenix, and it was about John Callahan,who became a quadriplegic in an auto accident at 21. The accident happened in his car after a day of drinking; his car was driven by a man with whom he had been bar hopping. Following the accident, he became a cartoonist, drawing by clutching a pen between his hands, having regained partial use of his upper body. His visual style was simple and rough, although still legible. His cartoons dealt with subjects often considered taboo, including disabilities and disease. He scoffed at the reactions of critics who labeled his work politically incorrect, while he delighted in the positive reactions he received from fans with disabilities. “My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands.” Callahan said. “Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

I love that he could make fun of himself, and depicted people with disabilities in all their glorious decrepitude. The brutal honesty commingled with humor came from his brilliant mind. His work was heroic and profane, ugly but beautiful in its blatant honesty. His mind was not affected by his disability, his body and his life were altered, and he had the wisdom to use this to make a better world. Yes, through crude humor, humanized by its ability to speak the truth.

Suddenly Mad- A Better World (John Callahan cartoon with hooks for hands - irreverent humor)

So I think about the man I saw with no legs begging for money next to the fashionably dressed woman waiting for the light to change so she could cross the street, oblivious to him. I think about it in a different way now. How would John Callahan have seen this scene?

Suddenly Mad- A Better World (John Callahan - cartoon - heads on carts - humour helps deal with the horror)

We’re all in this stinking, beautiful, cruel world TOGETHER. Let’s learn from each other and give each other the opportunity to laugh out loud about how simultaneously hideous and beautiful it is.

Stitches——————

Trying to learn new things. Last week Theresa, who my husband hired as a part-time companion for me, taught me how to crochet. I didn’t think I could learn to do it, but remembered that Cecil, a man who I met on Dementia Mentors zoom chats, who has posterior cortical atrophy (a form of Alzheimer’s) learned to crochet and knit, and wears the hats he made for himself. It was really hard to learn and took all of my concentration. My fine motor skills and coordination are messed up, and manipulating the crochet needle, while holding the yarn around my pinky and index finger, and pushing the needle through the right hole in the continuous rows, was dizzying. Pulling the loops out so that I had room to pull the yarn through – and remembering to pull the yarn through the first loop, bring it up and wrap the end of the needle again, and pull the yarn through two loops, and keep it going, took a great deal of attention and dexterity. Theresa took these photos of my efforts.

At the end of each row, Theresa showed me how to turn the needle and tie the end, so I could continue to produce another row.

My friend Jackie, who is the chairperson of Dementia Action Alliance, refers to my writing and artwork and the way I weave my story, as a tapestry. I’m sewing, crocheting, and stitch by stitch, the story emerges.

Stitch by stitch. Fragments pieced together.

Weaving my way through the maze.

8 thoughts on “A Better World

      • Thank you, Minna. I appreciate your sharing of yourself so generously. I had forgotten how depressed I once was. i’ve learned and understand my depression better having read your posts.I had forgotten that I had been on lithium until today. Your parents’ story reminded me of my own family history and how that could contribute to our emotional being. My mother’s parents had survived Mao’s regime. My grandfather could have been killed had he had been caught. Because his friends had warned him, he escaped to Hong Kong. My grandmother was thrown in jail in his place. All their stories are also in my DNA. All my mother’s siblings are in NYC. My grandparents died there.
        I hope to read many more posts from you. I don’t know how I came upon your blog. It was not an accident, of course. There are so many angels out there. I think you are one of mine.

        Lily

        Like

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