"I saw with my own eyes the Sibyl at Cumae hanging in a cage, and when the boys said to her: “Sibyl, what do you want?” she answered: 'I want to die.'”
These words open T.S. Eliot's glorious poem, "The Waste Land." Well, the Latin does. This is Eliot's translation. I've loved this poem for its richness and difficulty since reading it in high school. In the decades since, scenes and phrases from the poem have resonated at different moments. The opening words of the Sibyl in particular. In particular now.
It's a tragic story. A painful story. When I was in grad school, just discovering feminist criticism, reading Elaine Showalter and Gilbert and Gubar, the Sibyl was a feminist icon punished by the patriarchy for her gift of prophecy and her rejection of Apollo. Standing up to men and power. A guide in The Aeneid at the margins, her power diminished.
Now, as the daughter of a 96-year-old mother with Lewy Body Dementia, the Sibyl speaks to me in new ways. Deeper ways. More personal ways. Hers is a cautionary tale.
In the Aeneid, it is Sibyl of Cumae who offers Aeneas a tour of the underworld. And she tells him how she came to be 700 hundred years old. When Aeneas promises to revere her always--"I will cause a temple to be built to thy honor and will myself bring offering," she tells him that she is no goddess, "I am mortal." And such is her tragedy. She explains how Apollo had promised her the fulfilment of a wish if she would consent to be his, "I took a handful of sand, and holding it forth, said, 'Grant me to see as many birthdays as there are sand grains in my hand.'" However, she continues,
I forgot to ask for enduring youth.This also he would have granted, could I have accepted his love, but offended at my refusal, he allowed me to grow old. My youth and youthful strength fled long ago. I have lived seven hundred years, and to equal the number of the sand-grains, I have still to see three hundred springs and three hundred harvests. My body shrinks up as years increase, and in time, I shall be lost to sight, but my voice will remain, and future ages will respect my sayings.
Sibyl, what do you want? I want to die.
Lewy Body Dementia (LBD) is a progressive brain disorder causing decline in thinking, movement, sleep, mood, and behavior. It is the result of abnormal protein deposits called Lewy bodies. It causes things like hallucinations, fluctuating attention, movement problems, and sleep issues. Among the sleep issues--acting out dreams. The doctors at the Adler Clinic at Yale are kind and clear. The aim is to manage symptoms with medications. Of course, the final point they make:
There is no cure.
Mine is not the only family to be devastated by LBD and all the multiple forms of dementia or Alzheimer's or Parkinson's or god knows what other cruel diseases. Diseases that shrink one's brain and one's world. I am sure, if I think back over the past 3-4 years, I could tick off the Kubler Ross-Kessler stages of grief that I have lived. Am living. We are living. All of us. Including my Mom.
At first, I would tell folks, "My Mom is a happy demented person." And she was. Her shitty memory was a source of humor for her. She'd preface questions with, "Did I already ask this?" and on the phone calling me in Colorado, "Sweetheart, I can't remember yesterday much less last week." She was just a little senile in a cheerful, goofy way. That's what we said.
Dementia makes everyone angry. Robert Hayden, in his wrenching poem, "Those Winter Sundays," writes of the "chronic angers" of his boyhood home. I grew up in a home that was filled with far more laughter than anger. The anger in Hayden's poem made him wary, kept him on edge. As my Mom's disease progressed, we all became tentative. When would she explode? When would a vicious anger erupt (and as quickly pass). Her anger, her unreasonableness, made me angry and resentful. Trips back home to Connecticut were exhausting. Always waiting. Always wary. Never sure what word or deed would trigger attacks that became increasingly cruel, increasingly vicious.
The bargaining came later.
One of the symptoms of the disease is depression. One of the effects of the medication is depression. My Mom, who would never slow down, my Mom, who raked leaves incessantly, my Mom who vacuumed multiple times a day, my Mom who made the treadmill a routine, now sat in front of a blaring television. She'd ask, "what are we going to do today?" And when the time came to do it, she would refuse. No one had asked her, told her, or cared about her. My Mom, who was dressed and made up and stylish stopped dressing and making up. And watching her wither, watching her disappear, watching her become a stranger made me depressed and irate.
When you live 2000 miles away, out of sight out of mind is easier. Not easy, easier. My Dad carried the load, and he embodies "acceptance." He sat through her withering tirades. He endured her shifting moods, clinging, I think, to those moments, steadily decreasing, when she was the wife and mother we loved so very much. He made her meals that she did not eat. Rejecting them with nastiness and complaints. He ensured she took her medications and saw her doctors. His world became circumscribed by her wants and needs. Anger shrouded that world like a mist. But my Dad seemed to skips stages 1-4. He embodied acceptance. Until he could not. And after three years, she was placed "in care."
Missing from the Kubler Ross the list is loneliness. And fear. I am terrified of the future. I bargain with the fates, with god, with my own body. At 2AM, when I am wide-awake wracked with guilt and fear and anger, I realize that,in some things--that is this thing--I am alone. I reach out and put a hand on Peter's back for comfort. He sleeps so soundly. Amos, my sweet pup, sleeps soundly. I am the only one awake.
So, I make lists.
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