“Pure alexia,” says the neurologist. I look blank.
He elaborates: “She won’t read again.”
I am standing behind mum, a hand on her shoulder. I feel her stiffen.
Later, in the privacy of a loo, I will drag out my phone and Google the condition:
‘She won’t read again’: I can’t conceive of my whip-smart mother not being able to fathom words on a page
‘My wife won’t perform oral sex on me and I’m resentful’
Unions to serve notice of industrial action on HSE next week
Rising demand for HRT is ‘making it harder for pharmacists to ensure consistent supply’
Pure alexia typically occurs after a stroke. It is characterised by the inability to read while still being able to write.
I do not tell Mum what I learn, and we do not talk of the doctor’s revelation for days. When we do, we do it in the sunlit privacy of the garden of the rehab facility where Mum will remain an inpatient for months.
“I was shocked by what the doctor said,” she confides.
Me too.
“Do you believe him?”
No, I say with a laugh, to show how ridiculous the notion is that Mum won’t read again.
Mum smiles, “Me neither.”
I cannot conceive of my whip-smart, widely read mother not being able to fathom words on a page.
“Won’t her brain learn to make new connections?” I ask the doctor when I catch him on his rounds, “Instead of going A, B, C, D, won’t messages learn to navigate a different path, D, B, A, C ... ?” My voice trails off. I already know the answer; his face has given it away.
No. “It doesn’t work like that in case of pure alexia”.
Pure alexia – as if we ought to be encouraged by the ‘pure’, as if it does not spell a blemish, a stain, an infarct in her left occipital lobe – is very rare. One in six people have a stroke in their lifetime. Only a tiny handful in every million lose their reading. It requires, Google explains, a very specific brain damage pattern.
[ Dementia: At lunchtime, my Mum knew I was her daughter. By evening, nothingOpens in new window ]
Books were Mum’s solace and salvation, a buffer to the worst days of her regular depressions. She was able to step into somebody’s else’s story then, when her own became too difficult to bear.
She taught me to read as a child. I sat beside her, leaning in to follow the passage of her finger across the page. We sounded letters out phonetically: a (for apple), buh, kuh. With those sounds we built words which, thrillingly, built a story.
Later, Mum taught me to teach my children to read. My bookshelves sag with the weight of books she gifted me, and her grandchildren.
I ask if I can attend speech and language sessions. We don’t normally allow this, the therapist informs me stiffly. “This,” and she waves a hand vaguely as if to prove it hasn’t happened before, “this family-members sitting in on therapy thing.” But she relents.
When you are told your mother will not read again, because the route between her eyes and her brain is blocked by the clot that lodged itself there, you imagine the alphabet must still be in there, it just needs teasing out. It is devastating to discover this is not the case. That every single letter must be relearned. Every F deciphered from a T, every b from a d.
I am shocked to find that Mum learns to read ‘Cat’ quite differently to the way she taught me.
I place my forefinger beneath the word.
C a t.
She stares at it, frowns, shifts in her seat.
I trace the crescent of the C, “What’s this?”
“See?” She poses, tentatively. C.
Yes, I say, puzzled that the letter was not sounded phonetically, as Mum taught me, as she taught me to teach my children: Curly Kuh, they’d have said.
We struggle through to the ‘t’ which Mum delivers as an ‘f’ until the sense of the word prompts the right ending. C.A.T.
“Cat,” she says, and smiles an uncertain smile.
“Not Caf,” she laughs, “silly me!” And I join in – conspiratorially; I want her to know we’re in this together.
Those of us who read with proficiency see words as images on a page, and because we view them in entirety, we can grasp their meaning in an instant. This ability is lost to sufferers of pure alexia. That – and the fact Mum is apparently no longer able to sound letters out as helpful hints to the word – make teaching her to read again more challenging than I expected.
Sometimes my sister, a teacher, introduces me to clever strategies: visual tricks to help somebody learning to read – or read again – get a letter the right way round or the right way up.
“See the word, bed,” my sister says, and I watch closely as she writes: “Imagine the b is the sleeper’s head and the d the foot of the bed, see how the letters make the shape of a bed.” And she smiles at the cleverness of this little hand-eye trick.
But when I present the same lesson to my reading student the next day, she falters.
I see Mum gazing at books on a tall bookshelf teetering in a hallway in my home. Her fingers lightly trace spines. Sometimes she plucks a book out and studies it, brow crosshatched
The bed is ded; D.E.D, Mum says.
The rarity of mum’s condition means there’s a paucity of experts. One, in London, connects me with Prof Sam Martin, one time head of the School of Biology and Biochemistry at Queen’s Belfast. Sam didn’t just learn to read again, he wrote a book about the experience, A Stroke of Luck. From our conversations I learn that teaching Mum to read again may be possible. But not easy. We must not mind going right back to basics, he warns.
Give her short lists of random letters, until she can recognise every one easily, suggests Sam. “When she can, give her short lists of two- and then three-letter words.”
[ Dementia Diary: ‘I’m sorry. I forgot you were my daughter’Opens in new window ]
An expert I speak to in Arizona uses the phrase “readability score”. She’s had patients, she says, whose reading scores were as low as six. These numbers mean nothing until I resort to Google (again) to understand reading speeds and check my own. It’s 314 words a minute. Average. Mum’s slowly rises from 17 to 22.
The Arizona expert advocates reading the same passage over and over again, to build Mum’s confidence with repeated recognition of the same arrangements of letters. It is mind-numbingly dull. We sit at a table for ‘school’ and read and reread dry-as-a-bone paragraphs over and over until I think I might scream. Not Mum: each time we get to the end, she takes a deep breath, “Again?”
I see Mum gazing at books on a tall bookshelf teetering in a hallway in my home. Her fingers lightly trace spines. Sometimes she plucks a book out and studies it, brow crosshatched.
Friends say, “What about Audible?”
But there are problems with Audible when you’re 75. Navigating your way around devices you’re not used to. Honing your auditory attention when you are more comfortable on the page. Devices are not the answer to everything, I think.
One day I find a book from my eldest daughter’s childhood collection, Amelia Jane. Inside she has written her name and the date: 2000. My Amelia Zoe turned seven that year.
There can be no doubting, given the cover: this is a children’s book. But the text is large and well-spaced. Perhaps that will make it easier to read.
I open the book and press it into Mum’s lap, try this line I say:
There was a new toy in the nursery. It was a little telephone. It stood on the nursery bookshelf looking exactly like a real one, but much smaller.
Mum reads so fluently I think she must have guessed at the words.
She looks up at me, startled. “That was easy,” she smiles.
I reread them myself; she has articulated each one exactly as it presented in print.
Two hours later, when I check in on her, Mum has “read” 158 pages.
I know she’s cheated. She has not read all those pages. Not at what proves a final reading speed of – on a good day – 35 words a minute. She has slipped her bookmark deeper into the book.
But I notice she begins to take Amelia Jane with her everywhere after that, to and from her room, carefully relocated from bedside to chair, as if clutching a security blanket, some frayed part of her former unbroken self.
Anthea Rowan cared for her mother in the last 18 months of her life. Her memoir, A Silent Tsunami, is published by Bedford Square Publishers
