Remembering ‘Still Alice’: An Ode to Tales of the ‘Uneasy A’

Stephen Karam’s ‘The Humans’ hits the screens some time in November 2021, ft. Amy Schumer and Richard Jenkins, and what’s caught my eye in the trailer is not the commentary on the facade that is ‘family’, but the grandmother in the plot “Momo” Blake, who suffers from the big ‘A’ (read: Alzheimer’s Disease). She hasn’t a line in the trailer, she is a prop being wheeled around and sat down gently at the family table during dinner, she’s the woman being talked about right in front of her as though she is a non-entity, and as far as the story is concerned, and I am willing to bet a lot of money on this.. ‘Momo’ is a lump of lard being preserved until it expires (“Don’t you think it should cost less to be alive?”). Now, that bothers me. So, I brought out my well thumbed copy of Lisa Genova’s ‘Still Alice’ circa 2007, which was adapted into a film starring the delectable Julianne Moore (Circa 2014 and the Academy Awards ’15, thank you very much), and I decided to write my two pence on it. Why? To talk about Alzheimer’s how it is portrayed in cinema, especially Indian cinema.

‘Still Alice’ is the story of Dr. Alice Howland, a tenured professor of psychology at Harvard, who gets diagnosed with Early-Onset Alzheimer’s Disease (EOAD) at the age of fifty one. The ‘early’ aspect of the disease is a misnomer. While most people get AD at the young age of eighty, eighty five, Alice gets it at fifty one, being quite ruthlessly cheated out a brilliant life, but a part of the book touches on how, at that age, people attribute memory lapses to stress, menopause or quite possibly laxity. In short, even detecting it at fifty one becomes an act of ‘late diagnosis’ by itself of an early onset.

The book has all the workings of a story of an alzheimer’s protagonist. It starts off small, forgetting your glasses or mixing names, foraying into the usual forgetting your way back home, forgetting words, and then people, with the grand finish: yourself.

There is no conflict in the book, apart from the disease itself (watch: Black (2005), Thanmatra (2005), U, Me Aur Hum (2008), OK Kanmani (2015) and the more recent, 60 Vayudu Maniram (2018)). For example, in Emma Healey’s Elizabeth is Missing (2014), which was also adapted into a TV Show of the same name (2019), the person suffering from AD is forced to embark on a hunt for a missing friend. Many of you may also remember something similar with Nolan’s ‘Memento’ (2000) or Murugudoss’ ‘Ghajini’ (2008), where constant reminders had to be planted by the forgetful protagonist of his revenge plan. Some romantic dramas like 50 First Dates (2004) and The Notebook (2004), or U, Me aur Hum, and a scene or two in OK Kanmani, try to hit on the point of how to love and continue to love someone who cannot place you or remember you or value you. But, Dr. Alice’s conflict is merely coming to terms to with her fast changing reality, and nothing else.

The loss of herself, in real time, is what sets the tone of the book ’cause a lot of emphasis goes into how she’s a human computer of sorts to begin with, so the intellectual decline is very distinctly felt (read: Satyajit Ray’s Bipin Chowdhurir Smritibhram), and she’s a professor of linguistics, so the loss of language as an expected consequence hits much harder than it should, her fear of losing the ability to comprehend books soon or be able to express herself is real, it can sustain through time. At the end of the day, when employed with nothing, but still forced to be alive, Alice is silently screaming ‘I’m still Alice! I’m still me!’, with no audience to her anguish, because she’s ceased to be Alice for everyone else (“You may not be the most reliable source of what’s been going on”). The predictability of the effects of the disease might put-off some. For viewers used to watching patients of AD on-screen/ reading about it, you know what to expect. You have a checklist. Addresses. Names. People. Faces. Check. Check. Check.

But, imagine being dead, but forced to still walk among the living, invisible, inconsequential, no longer heralded. Imagine having an IQ of 160 something and being baby talked to, after a point, having someone wipe your ass ’cause you’re no longer capable of taking care of normal bodily functions, having someone take all your decisions for you (no, you don’t like coffee, no, you like chocolate, we are on a vacation, you love it here). If growth is the sign of life, Alice has stopped growing and whatever she had to learn about the world or herself has already been learnt and cannot be altered anymore. The stop-clock has stopped and she cannot alter her status quo, try as she may. So, all she’s left with.. is her still being Alice. And that front row seat to the raging storm of the illness may retain you till the end.

What sets ‘Still Alice’ apart from other literature on the subject is that the story is told (majorly) through Alice’s lens.

It’s a second person narration style, but the thoughts and emotions of Alice are on the forefront. So, when Alice forgets something or someone, you can’t access that part of the memory, too. Translation: What’s forever lost to her, is forever lost to you, too, the reader. Lisa Genova uses multiple devices to paint a near-accurate picture of the illness: You have to-do lists that show rapid addition of particulars over time (one day, it’s ‘run’, the second, it’s ‘go for a run’, the third, it’s ‘go for a run at 5:00 PM’, the fourth, ‘go for a run at 5:00 PM with John’), you have reminders on her phone containing questions that she asks herself every day, hoping she can still answer them (she can’t), after a point words just become ‘thingies’, for her, and people just become descriptions and emotions that she just picked up, in the last minute. These details tend to prick you repeatedly, her increasing helplessness causing alarm bells to go off in your head, as if it’s happening to you. There’s a lot of tests conducted in the book, that you find yourself mentally participating in, and your own memory starts appearing to be failing you (can’t remember all the objects described, five pages later, can’t remember the numbers or addresses you’re supposed to remember, by the next chapter). The book itself becomes a maze, for Alice can’t remember scenes that have happened during the course of the book accurately, so you keep flipping back to verify the details (Is her father really dead? Did that really happen or does she think it did?). You lose faith in Alice, the same way she or the rest of the world lose faith in her. It exposes YOU as the incapable caregiver in times of (her) strife. It’s quite brilliant that way, an exercise book.

What irks me the most in the book is not the declining mental faculties of Dr. Howland (that, I was prepared for). It’s this denial that her husband, Dr. John Howland, a scientist at Harvard Medical School or her daughter, a lawyer, or herself, a professor in psychology, for Pete’s sake, seem to be in for nearly 50% of the book.

They refuse to accept the illness or its effects, inspite of all the tests pointing to the contrary, and they refuse to adjust themselves according to the necessities of the illness. Alice keeps hollering about how, had she been diagnosed with cancer, people would flock to her apartment with flowers and words of encouragement, while, with Alzheimer’s, she’s somebody people automatically avert their gaze from. They have deleted her long before her mind deleted itself. And I find a lot of sense in that argument. Her husband takes it in the worst possible way, he refuses to touch her, look at her, accept her for what she’s becoming, and he’s impatient, and selfish, and every thing a caregiver ought not to be, he cries repeatedly and talks about how much he’s suffering. At the juncture when she reveals her diagnosis, his first reaction (and note this down) is him rushing to his office to look up the disease. Not hug her. Not listen to her. Not attempt to assuage her pain in the slightest bit. But attack it with the gusto of a man of science, it’s frustrating. But, it’s easy batting for Team Alice. You’ve lost your memory, while the man lost his wife. This denial also makes her work in mysterious ways, she tries to measure how rapidly your memory is deteriorating to prove it’s not real (“The battery in her brain was running low today“), her family tries to train her to do everything she could before, as if she is a newborn, and not already ended. There’s a lot of medical terminology used and discussions made, as long as the characters refuse to accept the inevitability.

The bottom-line is that the book pulls up a lot of sensitive questions that need to be addressed by every person facing this conflict, posed through Dr. Alice’s story of her disease.

AD is genetic, would you conceive a child, if you knew you could give it to them? Is it necessary to make new memories with a person with AD, when they can no longer remember anything anyway? Should you try to make them happy, when their happiness ‘doesn’t count’? Should you invest in them at all, since there’s no cure and they are ‘already gone’? Should you try to alter their perceived notions about themselves at a given point in the day, with an ‘inconvenient reality’ that you are familiar with? As Oliver Sacks, the father of neurological case histories, asks himself (read: https://www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know). And more importantly, and this is coming from a place of lack of scientific knowledge, even if the patient’s mind has given up on her, is her ‘heart’ still intact (Translation: Can she still feel emotions for someone she has loved her entire life, involuntarily)? Alice contemplates suicide, at a few points in the book, ’cause if you lose your mind, what else is there to live for? That’s something to make you pause and think, too.

As a reader, who has very narrow access to her head, I also found myself frequently skipping long descriptions to get to the parts where some other lapse occurred (akin to skipping all the sex scenes in a Fifty Shades novel to discover there’s nothing left to the book), so as a caveat to readers: Be patient with it. Reading and remembering Still Alice has become a sort of talisman for me against the impatience and faithlessness that comes with dealing with a patient that has AD. So, while I wait for ‘The Humans’ to come out and show me how the director has dealt with AD this time, I can only hope they treat it with a humanity that is owed to the afflicted.

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