Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers. At the very least, they are a relief from medical terminology. If laughter has healing power, so too, may metaphor. Perhaps only metaphor can express the bafflement, the panic combined with beatitude, of the threatened person.
– Anatole Broyard Intoxicated by My Illness
Portrait of Mimi
I look for metaphors for this disease. As if words can save me. Shards of the broken mirror, Fractured memory. I try to put the pieces back together, daily.
My husband said that my getting this disease is like I was hit by Mack truck. That’s a good metaphor for this.
The duality. The will to live. Then wanting this to end, and then getting up again. A boxer down for the count. Stumbling to get up again. Down again. How long can my body and brain endure this siege before I have had enough?
The abyss. The anxiety as soon as I wake. Another day. Here we go again. Stumble to the bathroom. Back to bed. I have to get up. My body is not obeying the command. I can’t find the sleeve to my robe. My body exists in a different temporal space than all the objects around me. I’m blurred. I want to run away from myself, but it’s not possible to do that. Wherever I go, there I am. This disease yawns like a dark chasm. Sleep is the only escape but it’s morning and I have to get up. I’m both hyper alert and slow. I lean on the banister and descend the spiral stairs. Marcel Duchamp’s Nude Descending a Staircase has new meaning for me. I feel like this shattered splintered mechanical figure.
Every action has to be planned, confounded by overcoming unforeseen obstacles. I can be annoyed by a speck of dirt I see, but don’t see the big picture and fumble, about to fall over as I lean forward to pick it up. I’m shocked because something I thought was there is not. It can be a cup or a towel, that i moved myself, but I have forgotten where or the act of doing it. The ghost of me has moved it. Disembodied memory. I’m in the wrong movie.
I lumber when I walk. I watch my feet take the characteristic short steps and hesitate. On the street I look into the distance to avoid the obstacles. A two mile walk with my husband. Slow and I trail behind him. The bench at the halfway point beckons, and now I need to sit down. He does not like to sit. I tried to get up from the couch, and fell backwards sitting again.
I am in the later middle stages of Alzheimer’s. No longer early. The worst are the motor impairments, followed by my anxiety, aphasia and failing memory. Things which normal people take for granted, having a conversation, sending an email, getting dressed, eating a meal, playing a board game, walking on the street, opening the door with my keys, getting in and out of a car, etc. etc. are all tasks that take me an inordinate amount of time and concentration, planning and physical effort. Everything single thing is a magnified task. Inertia! It’s exhausting. I can only do one thing at a time and slowly.
I’ve also become an astute observer, characteristically watching those who are much further progressed and those who have not really progressed or have progressed very slowly.
I was appalled on Monday. Appalled at how odd I have become. I am aware that my behavior and reactions are the products of a disease that is ravaging my brain, yet I’m unable to act differently. As soon as I entered to auditorium I walked over to Beth and Bill who always sit in the back. The rows of bodies seated waiting for the program to begin, looked harsh, overwhelming. I guarded myself this way, but then ventured in, and sat next to Jeanne and behind a large woman with what to me looked like a huge head of blond bobbing frizz. Her joyful appreciation of the program was so distracting. It was like my field of vision lens is broken. Initially I wasn’t able to concentrate on the program because the my lens is broken and I can only see what is close up, or what is very far away. Finally things came into focus, and I was able to hear, see, process and enjoy what was an excellent presentation of songs and visual stories about Broadway’s musical past.
Afterwards I glanced at the woman who sat in the wheelchair, with the blank expression, a stuffed animal hanging limply on her lap. Only 73, she looks like 85 or 90. I’ve seen her before and tried to imagine her experience living with Alzheimer’s. She is docile and blank. No emotion registers on her face. Will I live to become like that? I pray I won’t. Life hangs on ridiculously long in some with this disease. Then I saw another woman fully hunched over in a wheelchair, her head on her lap. Late stage and yet alive. These are the ones that are fed by the aides. Washed by them. Dressed by them. The living dead. Or so it seems. But who am I to judge. Maybe it just looks that way.
Monday’s program hosted by Lincoln Center Moments (a program for people with dementia and their care partners) was called “Broadway Juke Box”. It was curated by a man named Evan Leslie, an artistic producer for the Lincoln Center of the Performing Arts library and archive. He was scholarly and passionate about the subject and presented a compendium of Broadway show tunes from old musicals presented with photographs of the composers, lyricists, choreographers. Jerome Robbins, Rogers and Hammerstein, Leonard Bernstein. He played old recordings from Oklahoma, West Side Story, Fiddler on the Roof, The Sound of Music… I was transported to my own past with the recording of Chita Rivera from West Side Story singing America. I sang this with my sister in our Bronx apartment.
Puerto Rico, You lovely island,
Island of tropical breezes.
Always the pineapples growing,
Always the coffee blossom blowing.
Puerto Rico, You ugly island,
Island of tropic diseases.
Always the hurricanes blowing,
Always the population growing,
And the money owing,
And the babies crying,
And the bullets flying.
I like the island Manhattan.
Smoke on your pipe and put that in!
I like to be in America!
O.K. by me in America!
Everything free in America
For a small fee in America!
I like the city of San Juan.
I know a boat you can get on.
Hundreds of flowers in full bloom.
Hundreds of people in each room!
Automobile in America.
Chromium steel in America.
Wirespoke wheel in American,
Very big deal in America!
I’ll drive a Buick through San Juan
If there’s a road you can drive on.
I’ll give my cousins a free ride.
How you get all of them inside?
Immigrants goes to America.
Many hellos in America.
Nobody knows in American,
Puerto Rico’s in America!
I’ll bring a T.V. to San Juan.
If there’s a current to turn on!
I’ll give them new washing machine.
What have they got there to keep clean?
I like the shores of America.
Comfort is yours in America.
Knobs on doors in American,
Wall-to-wall floors in America!
When I will go back to San Juan.
When you will shut up and get gone!
Everyone there will give big cheer!
Everyone there will have moved here
He played the Alfred Drake recording of the original Oh What a Beautiful Morning, from Oklahoma. I found this recording and rare film clip of Drake singing it from 1943.
Save for a few, most of the audience was older than me. Ten years, Twenty years. This makes me realize that early onset is rare. There was the wheelchair brigade, Bussed in from Atria, the memory care facility. Most of these folks haven’t a clue where they are. They could be in Kansas. It wouldn’t matter. Trusting their companion aides to get them from point A to point B. The rest of the audience were an assortment of older folks, some with dementia and some just happily old, experiencing memory glitches, glad to still be alive. The happy ones, I call them, they’re always smiling. Then there are the silent ones who shuffle. There are those whose words and utterances are completely nonsensical spoken through smiling lips. There those who say hello, how are you. Yet they don’t have a clue who you are. No one comes alone. There is always a spouse or a paid companion. The workers. This is the club I belong to now. The club no one would want to be a member of. Welcome. Let’s have a good time.
I have a disease that most people get when they are at least 75, and generally when they’re over 85. I’m twenty years younger than that. Younger onset progresses faster, In three years since my diagnosis I have progressed very fast. In earnest, you can’t fathom this from reading these words. You’d need to spend time with me in the physical realm and read my brain scan.
Evan Leslie played a recording of Oh What a Beautiful Morning, and I remembered hearing this song when my great aunt, who I referred to as my tante Bessie, sang this to me. My parents had gone to a wedding and taken my sister along. Bessie and Max babysat me. Max and Bessie slept in separate bedrooms, and that night I slept in tante Bessie’s bedroom with her. In the morning she brushed my hair, and sang me this song. It’s one of the sweetest memories I have from my childhood.
I timidly shared this little story about my tante Bessie in a discussion that followed the program. Why timid? Because it is hard for me to think, remember and get the words out. I used to give talks about my films to international audiences, and was a teacher and professor. I studied acting and was a talented performer, so I’m no stranger to public speaking. But I have Alzheimer’s and my speech and thinking are impaired. So this little display of extroversion was a big deal for me, despite the fact that at least half of the people in the room are in la la land, and could care less.
The program helped me understand how music is used to help people with Alzheimer’s remember. I’m more inclined to listen to Lou Reed and David Bowie, my dead heroes. George Harrison’s weeping guitar. My generation. But Broadway musicals trigger positive memories and produce warm feelings. It’s nostalgia. Corny and sentimental nostalgia helps us to hold on to our positive neural connections.
The music helped me remember that weekend with my aunt and uncle vividly. Uncle Max took me to the movies to see Fred MacMurray in The Absent Minded Professor. It’s about a scatter brained professor who invents flubber, a black and rubbery substance that bounces very high and seems to defy gravity. He bought me paper dolls with outfits to cut out, each outfit had paper tabs to fold over the shoulders and arms and legs of the paper dolls. I sat on the living room floor diligently cutting out the outfits and dressing the dolls. I had fun. I was six.
My parents didn’t buy me paper dolls. I don’t think I had that much with them ever. There were some bright spots but it was not a cheery home life, and I felt like a stranger in a strange land from an early age. There was a big plastic doll that my mother sewed clothes for. There is a photograph of me with that doll. I don’t remember playing with it.
I never knew my paternal grandparents. They were murdered in Poland because they were Jews. Everything would have been different if not for that fact.
Uncle Max and tante Bessie were like surrogate grandparents, but I didn’t get to see them that much. Uncle Max was my father’s uncle, and the only one in his family who was able to come to the USA in the 1930’s, avoiding the horrific fate of my grandmother Dina, his sister, who was murdered by the Nazis when they rounded up the remaining Jews in Gombin, and transported them in the Einsatzgruppen vans to the crematorium at Chelmno, the first extermination camp in the occupied Poland. Uncle Max died at around the age I am now of a heart attack. I remember his very round and fleshy face and the black rimmed glasses he wore. Max and Bessie had three children, but one of them, the eldest, a son, died in the Korean war. His photograph stood in a frame on Bessie’s dresser. Their other two children were Clara and Murray. Murray was a bachelor who lived in the apartment with them. He owned a business that manufactured eyeglass frames. A sore point of contention for my father was when he came to this country and asked Murray for a job, Murray would not hire him. Clara was a teacher and her husband owned a bakery. They lived in Dobbs Ferry in Westchester. They had one son, Danny, who is a year older than me, who I would sometimes see at uncle Max and tante Bessie’s apartment. I remember trying to make prank telephone calls with Danny on his uncle Murray’s phone. Clara and Murray are now gone, and Danny lives in the house in Dobbs Ferry. I send him my blog, but I doubt he reads it. I also send it to our cousin Sandra who lives in England, whose grandfather, Sender, was also uncle Max and my grandmother Dina’s brother. Sender also left Poland before the war, and settled in London with his Polish Jewish bride. They intended to travel to the US and paid a waterman to take them. He tricked them by taking them around the Thames river multiple times, telling them when they arrived at their destination that they were in New York harbor, when they were still in London. That is how that branch of my family ended up in the UK. Sender and his wife had two children, Eva and Harry. Harry married Hilda and they had three children, Ruth, Susan and Peter. Eva married Barney and they had a daughter who is my cousin Sandra. She reads my blog and writes to me and sends lovely gifts to my grandchildren.
Thanks uncle Max for taking me to see The Absent Minded Professor.
I sort things into categories. My immediate family. A few friends I see in person. The people I socialize with on zoom chats. The things I can still do alone; write, draw, play cognitive games, do crossword puzzles.
Socialization is important to provide memory impaired individuals with a sense of connectedness. My week is filled with Zoom chats so I’m sitting at my computer to engage with these folks – Dementia Mentors Cafe and Dementia Action Alliance, Dementia International Alliance, and my dementia mentor Laurie, who I speak with every Wednesday. Wednesday evenings I talk to Jackie who is the chair of DAA, and who I adore and have learned a lot from. Once a month I attend DAA’s art workgroup and participate in the presentations and plans. Tuesday and Thursday afternoon, my part time companion Theresa comes over and she helps with household tasks, we take walks, and crochet. Theresa’s best quality is her patience with me. I am far from easy to be with. I complain, am stubborn, and sometimes downright insulting. She’s not someone I would have been “friends” with if not for this dreadful illness, but I’ve come to appreciate having her help. Krishna my yoga teacher comes for an hour on Tuesday. It’s not long enough. His presence brings me some peace. Jeanne brings dinner and muffins she bakes, and we play Scrabble on Wednesdays. She has accompanied me to some of the programs for people with dementia in New York -Lincoln Center, The Metropolitan Museum. I appreciate the time she’s spent with me and her generosity. Dina Rose also visits, and accompanied me to the previous program at Lincoln Center. Dina is a sociologist and we learn from each other. She has seen the good, bad and ugly in my unfiltered ways. I really like her and wish I’d been friends with her before I became ill, when the playing field was more equal. Rabbi Scheinberg stops by for an hour every two or three weeks. He’s a stoic and solid spiritual teddy bear. My husband takes me the program at The Rubin Museum, Mindfulness Connections, once a month. The relationship with my husband is complicated. I hate for him that he has become my caregiver, and I know how much he resents it. We got unlucky. I don’t think he remembers how sweet it was when I was well. This disease has been hard on him, and as a loner he doesn’t open up to anyone about what he’s going through.
Old friends have fallen away. They can’t relate to what I’m going through, and do not want to be reminded of their own mortality, which seeing me or speaking with me does. I guess some of them figure, I am so damaged I may not even remember them. But of course I do.
Monday and Friday group zoom chats through Dementia Mentors are a kind of check in to say hello and listen to others talk about their day, their week, their lives. The presence of others on my computer is uplifting in an odd sort of way. It’s the recognition that there are people out there going through their own daunting challenges. I suspect my challenges are worse than most of them and that they are in much earlier stages because they have not lost the level of executive function I have and are not experiencing as much physical pain and mobility issues, but I dare not say that to any of them. We commiserate. There are some laughs. Most are in early stages of whatever dementia they have. Lewey bodies folks talk about their hallucinations and sleep disorders. I loved it when Craig shared that one night he had dozens of “Chucky’s” (as in the horror movie Chucky) dancing on his bed. One night they were friendly. The next they were horrifying. He said he covered his head with a pillow and finally fell asleep. It takes guts to share something like this. I can only remember having one hallucination at the beginning of this a few years ago. A pink shaft of light suddenly appeared to the side of my bed. I said out loud, “what the hell is that (!)”, and put my hand through it and it disappeared.
Thursday there is Dementia Discussions zoom chat. Wednesdays are my much loved private sessions with my dementia mentor, Laurie. We confide in each other. She is Ms. accommodations, always coming up with ideas for how to make things work, how to compensate for the losses, make things easier. She is very brave. She traveled to Africa with another person in the early stages. Since her diagnosis, she has even jumped out of a plan with a parachute. Yet she has her own confusion, loss of function and memory and pain. It’s not easy for her to get through them, but she does it and she unlike me she is not a complainer. She gives me courage to carry on. Like me, she’s seen it all, the poor treatment of the handicapped who reside in the nursing homes, the ways that each of us are so different in our progression. She has strong faith, and I believe this lightens her load and makes her more fearless.
There are things I can do alone, and there are things I do with others. Going to programs like Lincoln Center Moments, which is the best – live theater, performances and presentations. Unfortunately it won’t resume until October. Who knows what I’ll be like then and whether I am even able to get there, or if anyone will accompany me. Maybe I’ll be a hatstand by then.
At the Lincoln Center farewell until October I sat with Scott, the former plastic surgeon who has Alz, and his companion, Jonathan; Bill the former Mount Sinai doctor who has behavior variant fronto temperol dementia and basically doesn’t speak (I’ve never heard him speak, but Beth, his companion, says he does and can). Bill is always on his iPhone playing cognitive games. I sat next to Mark who is quite healthy and a slow progresser (I think he has mild cognitive impairment, not Alzheimer’s – my opinion), and Pam, his neighbor and traveling companion. I thought of our circle as “the dementia kids”.
There is The Rubin Museum, Mindfulness Connections on the third Friday of every month. This is one program that my husband takes me to. It’s where I am very observant not only of the artworks, but of the people who attend. I’m always happy to see the regulars, Scott, the former plastic surgeon, who is my age and was diagnosed five years ago. Maureen who is usually with her husband, but does not say much. Arthur is definitely the most jovial and charming fellow with dementia I’ve met. He’s in his 90’s and still going strong. I send my blog to his son Zach, who has kindly read my words and sent me comments.
Last Friday my husband drove us to Rubin, and as I entered the cafe where we meet, I saw two new faces. I went over and introduced myself to Stuart and Marianne. Stuart explained that Marianne is 66 and was diagnosed with Frontotemperal Dementia five years ago. She is mute. No words at all. She is physically active, and gets up and paces sporadically. Stuart explained that she is unaware. Does this mean she does not know what has happened to her? Does she not know she can’t speak? That condition is the polar opposite of me. I am hyper aware. Aware of how difficult it is for me to exist in this physical realm. Aware of imbalance when I walk. Aware that every physical transition needs to be planned. Aware that I talk to myself and give myself directions to get through my routines. Aware that my rants contain babbling that makes no sense. Aware that my body is breaking down along with my shrinking brain. Aware that my behaviors and moods are more than not, out of control. Aware of how afraid I am.
I followed Marianne down the spiral stairs after the program. Her mobility is fine, in fact she is quite agile, while I was hyper conscious of descending the stairs and held onto the banister taking careful and deliberate steps along the curves. When we were seated in front of the Buddhist shrine, and Laura Sloan described the way that each object in the shrine is supposed to engage the different senses which combines to create a transformative spiritual experience, and I blurted out, “that’s like Synesthesia, a European concept embodied in the 20th century teachings of Madame Blavatski”. Marianne was seated next to her husband, but got up from her seat abruptly and started pacing in circles energetically. One of the volunteers (Linn) got up and held her hand and paced around with her. Later, I watched her and her husband look at books in the bookstore after the program. She picked up a book and leafed through the pages. It all looked very normal, until she began pacing around the bookstands, circling around and around.
These damned diseases effect each person so differently.
When I got home, I looked up her name and found this article about her. It describes the private one on one art program that her husband has enrolled her in, where she paints and draws and has photographs of her and her colorful paintings of simple faces and figures. The teacher says she has to be watched carefully, because she will sometimes try and eat the art materials.
My husband and I walked to the other floors at Rubin and saw an interactive sculpture made of metal and LED lights, titled Breathless, by a Russian artist, Alexandra Dementieva. It is activated when a person walks inside and blows into a tube attached to a fan, an anemometer, which measures wind speed.
I use my photographs to remember where I’ve been, what I’ve seen, and who I’ve met. My Alzheimer’s visual encyclopedia.
On the way home from The Rubin museum I photographed things I saw outside of our car window. I used to teach art history and when we passed the main New York Post Office (across the street from Pennsylvania Station), a structure built in 1912, that takes up two city blocks, I could not remember the name for the type or order of the fifty columns grace the facade of that building. I taught Roman classic style to my students, and wanted to remember this. I knew they weren’t Doric, with the simple circular capitals at the top and bottom. I knew that they weren’t Ionic with the two paired spiral scrolls. I remembered that the decorative leaves on top are called acanthus leaves. But I was not able to remember the name for these columns until after we drove past them and were well on our way to the Lincoln tunnel. There is a time lapse in my retrieval of memory. Things still come back, but it takes time. Corinthian. Sigh of relief, I remembered finally. They are Corinthian columns and they will stand proudly long after most of us are gone. I always liked that word, Corinthian.
I panic when I’m trying to remember and can’t remember. The other night I looked at a photograph of my son and daughter-in-law with their baby daughter, who is now three and half. It was taken when she was around one. I realized in that instant I did not remember my granddaughter’s name. I panicked. How could I forget that? I wanted to bang my head on the wall, anything to remember my granddaughter’s name. I paced around urgently, and her name came back to me. Ellie! Eleanor Margaret. My darling granddaughter.
I do not want to live through this disease forgetting everyone and everything, words, faces, nuance, the very texture of life. The way everything relates and goes together. The names of streets, countries. Names. How to walk. How to eat. How to speak.
In Alzheimer’s, memory disappears in layers. First it is short term term memory that goes. leaving long term memory, memories of being a young adult, a teenager, childhood. Then that goes too leaving nothing in it’s wake. A person bereft of memory. What is a person without their memory? The brain forgets how to tell the body how to walk, how to pick use a fork or spoon or knife. Finally the brain forgets to tell the body to breathe, forgets to tell the heart to beat.
In the elevator coming down to the street, after the last Lincoln Center Moments program, four of the aides surrounded this old woman in her wheelchair. She was anxious about something I could see. Couldn’t make out what she was saying. One of the aides said, “you better stop it or I’ll call the police”. I was aghast, and turned to Jeanne, and I said, “She shouldn’t speak like that to her.” The aide overheard me and said, “She knows that I’m kidding”. I said “How do you know that?’ She said, “you should mind your own business.” When we got on the street, I saw the bus for The Atria, which is a nursing home. I understood that this is how the aides bring the people in the wheelchairs. They dress the patients and stick them in their wheelchairs, and herd them to the free access programs for social engagement and fun.