The neurologist does not cushion his words. He tells us how it is: “She won’t read again.”
I am standing behind my mother. I feel her stiffen.
We do not talk of this revelation for days – and when we do, we do it in the garden of the rehab facility where she is recovering from a stroke. The stroke has scattered her memory, but she has not forgotten she will apparently not read again.
I was shocked by what the doctor said, she confides.
Do you believe him? she asks.
No – I am emphatic, for her and for me – I don’t.
Mum smiles: “Me neither.”
The damage wreaked by Mum’s stroke leaked across her brain, set up roadblocks so that the cerebral circuit board fizzes and pops uselessly, with messages no longer neatly passing from “A” to “B.” I tell the neuro: “I thought they’d learn to go via ‘D’ or ‘W.’ Isn’t that what’s supposed to happen – messages reroute?”
“Unlikely,” he responds. “In your mother’s case.”
Alexia – the loss of the ability to read – is common after strokes, especially, as in my mother’s case, when damage is wrought in the brain’s occipital lobe, which processes visual information. Pure alexia, which is Mum’s diagnosis, is much more rare: She can still write and touch-type, but bizarrely, she cannot read.
And her short-term memory is in tatters. “The word drawer in your brain is jammed,” I explain; vocabulary retrieval is tricky, especially if the vocabulary has been recently added. In rehab, the patients on her ward, who all exhibit such side effects of stroke as speech impediments and one-side paralysis, have names that Mum does not remember. And the name tags above their beds – “Joan,” “Ursula,” “Meg” – are useless to her. Every morning a newspaper is delivered with her breakfast. Every morning I find her struggling to read it, because she has forgotten she cannot.
One day my siblings and I take her out to lunch. We guide her carefully; she is frail. Once inside the restaurant, we describe the menu to her, several times; it’s hard to pick from a menu if you can’t peruse it yourself, especially if you can’t remember whether the lamb comes with pea puree or roast vegetables. Settled on our decisions, we call the waiter.
What will you have, Madame, he asks Mum. She bows her head over her menu. I notice she has kept her finger beneath her choice since she asked me to point it out on her copy. “I’ll have the . . . ” she falters, looks up. “That’s the lamb with pureed peas, is it, Madame?” Mum smiles, relieved, and says yes. I want to weep.
My goal is to teach her to read again because, she says, “I cannot imagine a life without reading.” And I cannot conceive of my erudite mother – a lover of literary autobiographies, who read with a dictionary at hand so that she could look up every unfamiliar word – not being able to navigate a book. I think of this when I see her gazing longingly, uncomprehendingly, at the bookshelves in my home, her fingers tracing spines. Many were hers as a child, many she bought for my own children. And read to them.
Now she battles with the word “cat” on the page. No matter how long she gazes at it, she cannot figure it out, but if I spell it out, she tells me immediately what it is. That auditory part of her brain has remained intact.
Alex Leff, a University College London neurologist who is one of a handful of global experts on pure alexia, explains to me, when I call him to find out more information for Mum, that with healthy brains, we don’t have to break down words as we read them: We see the word “cat” as a visual object. Mum’s condition has robbed her of that ability; she has to break it down into its component parts, articulate every letter and then try to reassemble the word.
He notes of Mum’s diagnosis, “Pure alexia is rare. It’s studied a lot because reading is damaged but, paradoxically, writing is spared. I probably only see one sufferer a year in my clinic. Central alexia [where reading and writing are both affected] is much more common.”
Another alexia expert, Pélagie Beeson of the University of Arizona, tells me that less than 6 percent of the patients she works with suffer from pure alexia. She is encouraging, though, about Mum’s eventual return to reading – with support and practice, lots of practice.
She advocates repetition, the same high-readability-score passages over and over. Readability scores describe the complexity of a passage: The lower the score, the more challenging the language and sentence structure. “The cat sat on the mat” has a score of 120; text in the Harvard Law Review, the low 30s. Beeson suggests we start in the 90s. “And time her as she reads,” she says. Some patients see reading speeds rise within months from just six words a minute to 60 or more.
Armed with a piece of writing about Egypt’s Sphinx in short, terse sentences, Mum and I sit to read. I am heartened: Mum completes the piece in 15 minutes: 18 words a minute. As a yardstick, I time myself, privately. It takes me 60 seconds, a single minute, to read the piece in its entirety.
For two weeks, Mum reads to me, sometimes twice a day. The same passage, 280 words, over and over. I note which letters she has particular difficulty with: D, P and B are often mistaken for one another; ditto for F and T, and C and S. Her speed picks up. Slowly. I high-five her after a record 30 wpm. This will not be a miracle cure, I realize. She will not be reading “Finnegan’s Wake” anytime soon. But Leff and Beeson have assured me that improvement will continue, possibly over years. Mum and I agree that that makes the practice worth it even if, as she says sadly, “I feel so stupid when I cannot decipher a word.”
And the reality is that, at almost 75, she may never read a book again. Yet her urgent need to try remains palpable, evident in the way she picks up copies of National Geographic and idly flicks through them, marveling at the photographs and battling to make sense of the captions. Before her stroke, to leaf through a book, a paper, a magazine in search of knowledge or distraction was instinctive. It still is.
But eventually I notice something unexpected. In the cavernous gap gouged by her loss of reading, a gap I was terrified would create swallowing disillusionment, she is casting a different self. She buys a sewing machine and tackles a pair of cushion covers. She probably couldn’t master a wedding dress – as she once did (mine) – but the cushion covers deliver occupation. She assumes an interest in my garden – dead-heading plants, observing with delight new growth on young trees. She is thrilled when I produce a large jigsaw puzzle: “Oh, I can waste time here,” she laughs. Her iPad goes everywhere with her; she trails the strains of global podcasts informing her as a daily paper no longer can. Mum, always a news junkie, again initiates discussions over meals – on terror threats, on the Chinese economy, on That Man Trump.
My mother taught me to read. I have realized I probably won’t be able to teach her – not so that she can immerse herself in literary worlds the way I do or the way she once did. In the beginning, on diagnosis, the idea that Mum might never read a book again was abhorrent to her. To me. Terrifying. But she has recovered enough of herself to return to old hobbies, to find new ways to engage.
I was afraid that in losing her ability to read, she would lose herself. But she hasn’t. Six months on, she can deconstruct a short email, a recipe for tomato chutney. A menu.
The next time we go out to eat, she will manage her selection herself.