Still Alice

Still Alice

This week I read Still Alice, a book about a Harvard psychology professor who discovers that she has early onset Alzheimer’s disease. I always enjoy reading books set in places I know and the slices of Cambridge alone would have led me to pick it up. It was a very moving story about a terrible disease, and it was in turns both sad and uplifting. But it was also troubling in one subplot and that was the bit I couldn’t get out of my head this morning at Mass while Father preached a homily on respect for life.

Alice’s oldest daughter, Anna is married and is trying to get pregnant. When they have trouble conceiving they turn to IVF. When Alice discovers that her Alzheimer’s is genetically linked he daughter decides to get genetic testing and finds that she too has the marker. She will also have early-onset Alzheimers and has a fifty percent chance of passing the gene on to each of her children. They decide to have the embryos screened and to discard any that have the marker. The novel ends with the daughter giving birth to twins and declaring to her mother that they are positive that the twins do not carry the Alzheimer’s gene.

“Anna, you had your babies,” said Alice.
“Yes, Mom, you’re holding your granddaughter, Allison Anne,” said Anna.
“She’s perfect. I love her.”
My granddaughter. She looked at the baby with the blue ribbon in John’s arms. My grandson.
“And they won’t get Alzheimer’s like I did? asked Alice.
“No, Mom, they won’t.”
Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn’t known in a long time.

I understand why this scene is supposed to be warm and comforting, but it left a bleak cold place in the center of my stomach. What about the granddaughters and grandsons who were created but never implanted? Were they not worthy of love because they had a defective gene? The book argues that the heroine has dignity and worth despite her mental defects, but this scene has a more sinister subtext.

No mention is made of the babies who were conceived who did carry the gene who were deemed unworthy of life and discarded. Alice envies Anna that she is able to protect her children from harm. But muses that the embryo that became Anna would have been discarded. Is that stray thought enough? It doesn’t state clearly enough that the embryonic Anna that would have been “discarded” was a human being in her own right regardless of her age and size.

I know that many in the world think those embryos were not people. They seem them only as potential people and believe nothing terrible happened when they were destroyed. But those of us who have eyes to see it see tragedy. Ironically, many people think the same of a person whose mind has been ravaged by Alzheimer’s so that they no longer have any self awareness.

In her speech before the Dementia Care Conference Alice pleads for more creative approaches to Alzheimer’s care:

“I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb, or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite those losses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers, navigate their way through this Dr Seuss land of neither here nor there.

“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.”

While this novel pleads for the dignity and worth of the Alzheimer’s patient, it ignores the dignity and worth of the small innocent child whose life was ended so summarily before the brain had time to think or feel. But if the lack of mental capacity does not mean lack of worth in the adult, it should not mean lack of worth in the child either. That child could have had so many todays that could have mattered. That child could have smiled and laughed and triumphed. Perhaps that child could have even found a cure for Alzheimer’s in the many years that child would have had before his brain began it’s inevitable failure.

This book made me so very, very sad. That on one hand it could make such a moving case for the worth of each individual day and then deny that those days would have meaning for a child who had yet to be born. First the novel defends the dignity of life and then on the other hand it treats life as disposable. 

This is why we plead and pray, so that some day all life will be seen as having inherent dignity. The embryo is valuable because like all of us it is also made in the image and likeness of God and is a unique human person.

There is one moment near the beginning of the book when Alice, who is still struggling to come to terms with her diagnosis, finds herself disoriented outside of a church. This is the only time God comes into the story. This is the other moment that haunts me.

She knew exactly where she was. She was on her way home, in front of All Saints’ Episcopal Church, only a few blocks from her house. She knew exactly where she was but had never felt more lost in her life. The bells of the church began to chime to a tune that reminded her of her grandparents’ clock. She turned the round, iron knob on the tomato red door and followed her impulse inside.

She was relieved to find no one there, because she hadn’t formulated a coherent story as to why she was. Her mother was Jewish, but her father had insisted that she and Anne be raised Catholic. So she went to mass every Sunday as a child, received communion, was confirmed, but because her mother never participated in any of this, Alice began questioning the validity of these beliefs at a young age. And without a satisfying answer from either her father or the Catholic Church, she never developed a true faith.

Light from the streetlamps outside streamed in through the Gothic stained-glass windows and provided almost enough illumination for her to see the entire church. In each of the stained-glass windows, Jesus, clad in robes of red and white, was pictured as performing a miracle. A banner to the right of the altar read GOD IS OUR REFUGE AND STRENGTH, A VERY PRESENT HELP IN TROUBLE.

She couldn’t be more in trouble and wanted so much to ask for help. But she felt like a trespasser, undeserving, unfaithful. Who was she to ask for help from a God she wasn’t sure she believed in, in a church she knew nothing about?

She closed her eyes, listened to the calming, oceanlike waves of distant traffic, and tried to open her mind. She couldn’t say how long she sat in the velvet-cushioned pew in that cold, darkened church, waiting for an answer. It didn’t come. She stayed longer, hoping a priest or parishioner would wander in and ask her why she was there. Now, she had her explanation. But no one came.

I want to rewrite that scene. My heart aches at the loneliness and heartache and longing and at the silence that meets them. I do not believe that scene. I do not believe there is no answer. I do not believe we are left alone in our times of trouble.

And yet I know that loneliness is also real. I know that too often no answer appears. Not because God refuses to answer but because we refuse to give voice to his answer. We refuse to show up in the church, we ignore the call and the waiting woman waits on, gives up, goes home unanswered.

I do not want it to be true but I know that it is. I know that the parishioner who was supposed to comfort Alice was too busy. That she heard a voice that told her to go to church and that she ignored it. I know that there are Alices out there who go unanswered because God calls and the ones he calls say no. And that other tragedy, the one of the discarded embryos, it is no greater than this.



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