deborah: Kirkus Reviews: OM NOM NOM BRAINS (kirkus)
[personal profile] deborah
Four days ago, I read the Kirkus review of Lara Avery's The Memory Book after seeing it linked on the Kirkus Best YA of 2016 list. I promptly placed a library hold.

One day ago, my hold came in at the library and I read this novel from the point of view of a teenager diagnosed with Neimann-Pick type C, a rare lysosomal storage disease which causes physical and cognitive degenerative symptoms.

Two years and two days ago, my sister died of Late Onset Tay-Sachs disease, a rare, adolescent-onset lysosomal storage disease which causes physical and cognitive degenerative symptoms.

So. That happened.


One of the realities about reviewing and teaching is that they've inflected all my reading. No matter what I'm reading these days, I almost always have some part of my brain reading with the level of detachment I need to think about the book like a scholar or reviewer. That was not the case here, although oddly, not because it was too painful. It's just that the experience was too personal for me to retain that level of analytical detachment. Have you ever watched a television show about your profession or your hometown, and been unable to tell if it's a good TV show, because the inaccuracies (or accuracies) are so overwhelmingly definitive? That's how reading The Memory Book felt to me. On one level, I read it like any high-emotional-impact novel. But on another I actually can't be detached over whether or not it was successful, well-constructed, emotionally real, etc. It was too close to my family's experience.

Reality and verisimilitude

When I was in graduate school, I took a fiction writing class from Nancy Bond. I remember one exercise where I tried to write a scene from my sister's point of view. I failed. I could not get into the headspace of what it would be like to be a young woman who had been a particularly bright child and then, in adolescence, slowly become aware that she was massively losing cognitive ability. The review of The Memory Book made me wonder if Avery's book had captured what I failed to.

It didn't. Many of my reactions to this book are so touched by my family's experience that I can't be objective about them, but I can objectively say that this is not a particularly accurate representation of the kind of cognitive degeneration caused by Neimann-Pick type C (NPC) or Late-Onset Tay-Sachs (LOTS).[1] Moreover, it didn't particularly ring true to me for any type of dementia or cognitive decline, although I'm no expert; it seemed more Flowers for Algernon than anything real. (The protagonist retains all--quite advanced--cognitive ability and memory formation, except for episodic moments in which she imagines herself into a specific date in her childhood and reverts to a child's spelling and capitalization.)

Pacing of diagnosis and disease prognosis is also completely off, although some of that is arguably the result of the necessities of narrative fiction. Nigh-instantaneous diagnosis of rare diseases with unusual onset schedules is basically unheard of, and the odds of the protagonist being diagnosed, as she was, before any behavioral or cognitive symptoms started to cause her problems with her peers or teachers is effectively nil. The quick progression of the fictional version of the illness is arguably justifiable for emotional impact in the narrative: how much story arc can be fit into a very small, compact story. It would probably be a less successful book, emotionally, if it didn't modify these timelines so intensely.

For comparison, my sister was diagnosed after at least four years of multiple incorrect diagnoses (epilepsy, muscular dystrophy, and drugs are the ones I remember), despite Tay-Sachs having a characteristic symptom which can theoretically be identified by any eye doctor, and despite living in one of the global capitals for genetics research and world-class teaching hospitals, and with a population which would have a reasonably high genetic propensity toward the disease. To be clear, it was her high school that diagnosed her as a drug addict, and she had long since lost her friends by the time the illness was actually diagnosed. Adolescence is rough enough without massive behavioral, cognitive, and emotional problems. (Even those of us with more conventional unusual conditions and illnesses can attest that doctors don't start looking for unusual causes until the patients continue fighting back after every single usual cause has been ruled out. And anyone who has fought the medical establishment as a teenage girl knows that, as far as most doctors are concerned, teenage girls are not considered honest or accurate reporters of their own unusual symptoms.)

One note: As a reviewer, it would have given me pause, definitely, that a book like this rare disease doesn't provide any more information about the disease or links to useful organizations or foundations. It also would have given me posit the acknowledgments don't reference any NPC organizations, patients, or families in any obvious way. That doesn't mean the author didn't do her research, but it's the kind of thing that I noticed is a red flag. And the lack of an author's note with more information isn't a dealbreaker in a fiction book, but it's certainly something I would have expected in a book like this.

Representation

As I read, I continually tried to think if my sister would have found this book valuable as a young woman. Overwhelmingly I think she would not have. Some of these reasons are incredibly personal; she didn't like reading, is a big one. But others are inherent in the book

One of the biggest ways The Memory Book rang so cruelly false to me as a family member (the protagonist's easy ability to gain multiple boyfriends after her symptoms began) might read as enjoyable and even necessary wish fulfillment / aspiration for readers with one of these diseases. But aside from that character point, I do think the inaccuracy of diagnosis and prognosis would have felt more distancing for my sister and her LOTS peers than it did for me.

Ultimately, whenever I asked myself the question I asked my students--Is this a book for, or a book about?-- the answer felt clear to me. This felt like a book about characters with a disease like NPC, not a book for readers who have those diseases. The timeline modification I mentioned above, for example, creates a narrative with a high emotional impact, but a large distancing effect for people who are familiar with these illnesses.

The Fault in Our Stars and the Purity of the Ill



I'm going to quote two passages from The Memory Book here. Both are spoilery.

"Listen, you can go anywhere you want, you can conquer the world, you could have gone to New York and been incredibly successful, and I know you would have been. [...] But the more you win, the more people you might have to beat out, or have to leave behind, the smaller your world becomes."
p.323.


Words cannot capture my grief at watching you fall away little by little. But I suppose in losing some layers, your golden core came out.
p.355


I need to be fair; both of these passages are spoken by the protagonist's mother, and if I'm going to critique lack of verisimilitude, I should also acknowledge its presence in passages that make me unhappy. It is absolutely true that this is the kind of justification for suffering that sick people and their loved ones come up with.

Nonetheless, this is also the kind of justification that ... when I say I started choking on enraged sobs of grief, I'm not speaking metaphorically.

Here's what makes your world smaller: Dying. Dying young. Dying in pain. Not understanding what's going on. Knowing that you once understood. Knowing that you don't have time to adapt to your new cognitive and physical normal because your condition is degenerative. Watching your friends leave because they are going to have college or jobs or families, and you are not. Watching your parents shrink into the misery of people watching their child die before their eyes.

Here's what does not make your world smaller: Going to college. Leaving home. Trying to achieve your dreams.

Look, you all know how I feel about disability, and about how it doesn't end life, or quality of life, or life worth living. You know how adamantly I say that disabled lives, whether physically, cognitively, or psychiatrically disabled, are worth living. You know that I am 100% down with the fact that many disabled lives are better, with higher quality of life and more success by any metric than most able-bodied lives. But nobody should ever, ever, ever say that dying makes you a better person. Nobody should say that loss shows off your golden core, that aspiring to move outward gives you a smaller world than becoming resigned to loss.

Trust me, I understand that the deification of pain and suffering is a longtime feature of fiction. I bring up The Fault in Our Stars because as much as those characters explicitly and repeatedly speak angrily of people who idealize death, the text itself idealizes death; that book is widely beloved. The idea that suffering distills us down to something pure is an old and lauded trope of Western fiction.

It's just a super shitty one.

Is this book beautiful, as so many seem to think it is? I don't know. I can't know; I'm too close to it.

What I know is that it's not the book I hoped it would be. It's not a story which normalizes progressive cognitive disability, which understands such loss can be personally tragic without being narratively tragic. It's not a story that avoids the common pitfall of treating suffering and degenerative disease as purifying, distilling forces that make a character into a better person. It's not a book I want to give to teens suffering from degenerative diseases. And it's not particularly representative of reality.

It did make me cry, though.

[1] Disclaimer about this assertion: NPC and LOTS are related diseases, not the same disease. They have different progressions and different sets of symptoms, although many of the core symptoms are similar enough that some NPC people join LOTS groups for support (and vice versa, I assume). Moreover, any disease which is so rare--I believe both NPC and LOTS each have under well a thousand diagnosed living patients in the world-- is almost entirely edge case. It's hard to pin down typical. Nonetheless, I stand by my generalizations, and just discovered that at least one NPC family agrees.[Back]

In conclusion: Fuck Tay-Sachs. And Neimann-Pick, and Gaucher, and this whole shitty family, and all the rest of the rare diseases.

Date: 2016-12-24 03:52 am (UTC)
amaebi: (Default)
From: [personal profile] amaebi
To give a somewhat distanced response: This is a very helpful review essay, and one that carves the heart.Thank you for writing it.

Date: 2016-12-28 11:42 pm (UTC)
ayelle: Art by Katherine Dinger, pocketmole.com  (Default)
From: [personal profile] ayelle
Thank you for writing this. On an objective note, it's very helpful. On a more personal one, I can't ease your pain and anger, but I do bear witness to them.
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