Tag Archives: alexia

At a Loss For Words

by Renée Canada

Steven King, one of the modern American masters of storytelling is quoted as saying, “If you don’t have time to read, you don’t have the time—or the tools—to write. Simple as that.” There is a breed of writers who believe that one should simply focus on jumping immediately to the page and churning through the act and practice of writing. “It’s hard for me to believe that people who read very little—or not at all in some cases—should presume to write and expect people to like what they have written,” King adds.

King and other authentic storytellers recognize the knowledge that can be procured from observing how other writers craft words, sentences and paragraphs together just so, how they enliven truly authentic dialogue and create living and breathing settings that you can sink into. To read is to learn and to be inspired by others’ ideas, styles and expression of inspiration.

Imagine then a bestselling writer who finds suddenly unable to read. This is what happened to Canadian crime novelist Howard Engel. One seemingly ordinary morning, nearly a decade ago, Engel woke up to find his newspaper a jumble of what appeared to him to be Serbo-Croatian instead of normal English text, though the layout and pictures appeared normal. He went to the hospital and discovered he had suffered a stroke overnight. He recovered rather well in most areas, but was left with alexia: word blindness.

The stroke had damaged the left visual cortex and the splenium of the corpus callosum, preventing the parts of the brain that process what is seen to send visual information to the language areas of the brain. Though Engel still retained most of his vision, his brain could not differentiate the shapes that made up letters and words. For a bookworm who lived to read, this discovery was heartbreaking. “I was a one trick pony, and reading was my trick,” Engel later wrote in his memoir.

However, the part of the brain that controlled motor movement was not affected. With a pencil in hand, Engel found he was still able to write letters. Over time, he learned to trace each individual letter on the page or in the air, and later by tracing the letters of a word on his lower teeth with his tongue.  With repetition, came meaning. His remarkable “solution” to his condition caught the attention of the renowned neurologist, Oliver Sacks, best known for his book The Man Who Mistook His Wife for A Hat and the book Awakenings, which inspired he Oscar-nominated film. Engel’s story will be included in Sack’s latest book, The Mind’s Eye, due out later this year.

Amazingly, Engel has written two books since his stroke. In one, the latest in his popular Benny Cooperman detective series, Memory Book (2005), his lead detective develops alexia after being struck in the head and is affected similarly to Engel. He must jot down clues in a memory book to help him solve his latest case.

Engel’s 2007 memoir, The Man Who Forgot How to Read describes his recovery from the stroke, discovering he can no longer navigate and can only distinguish between certain fruits by smelling each one. He also struggles to figure out how to support himself, his young son and girlfriend. However, in therapy, he learned “how to make [his] disability a friend.”

Thinking of Engel’s loss of the ability to read reminds me of the heart-wrenching emotions I felt when I first saw the movie Iris in 2002. Iris (starring Kate Winslet, Judi Dench, and Jim Broadbent) tells the story of the free-spirited British novelist and philosopher Iris Murdoch through the eyes of her husband John Bayley. It chronicles the disintegration of the mind of Iris, who prizes carefully crafted words, inspired thought, and passionate debate of ideas above almost all else. As a fellow writer, I was especially disheartened watching the portrayal of her world growing dimmer and smaller as words began to elude her. It is quite telling that the symptoms she suffered in the early stages of Alzheimer’s disease she attributed to writer’s block.

In the early stages of the disease, tangled bundles of fibers develop deep in the entorhinal cortex of the brain, which receives highly-processed input from every sensory modality, as well as input relating to ongoing cognitive processes. One of the most commonly recognized early symptoms of Alzheimer’s is an inability to acquire new memories, such as difficulty in recalling recently observed facts. In moderate dementia, people begin to suffer from an inability to recall vocabulary, frequently leading to incorrect word substitutions, which terribly frustrated Iris as she continued to struggle to write books and converse with others. Gradually it became impossible for her to read or write at all, her manuscripts a pile of gibberish, and John tried to help substitute for that loss as best he could. Eventually, as long-term memory was increasingly affected, Iris began failing to recognize close friends and eventually her husband, John. In the end, it is only John who retains the memories of their lives together through the years.

I related very much to the film’s view of the world as an overflowing medley of experiences that gain meaning through our process of perceiving and storing memories of them. These memories shape the way we look at the world, how we relate to others, and how we perceive ourselves. The thought of one day losing the very process of thought and memory is terrifying.

Perhaps it is enough for non-artists to just experience an event as it comes and then let it go. But I relish in the memory of an experience almost as much as the experience itself. I like to roll it around on the tongue of my mind, letting every detail connect with each taste bud. I find pleasure creating in my mind another ending to the story of life or imagining a different path to the same ending. I love to envision how a different person would handle the same situation or how this same experience was viewed through another’s eyes.

Watching the film Iris makes me realize my occasional fear of aging is not really the fear of growing old. The idea of growing old with someone I love, knowing each other’s habits and thoughts so we well that we have almost memorized each detail fills me with longing. I embrace the wrinkles that carry the character and beauty of time. To me, the crippling of the body is not something I welcome, but the potential death of the mind is what most fills me with fear. Having lived with an illness that overwhelmed me with the kind of fatigue and pain that crippled the mind almost as much as the body, the dearth of inspiration or means to express it can be paralyzing.

On my worst days, I couldn’t even think of the word for pen or remember how to spell words I’ve used every day of my life. I couldn’t get through more than a line o r two of a novel before I realized nothing had sunk in. Rereading those lines again and again only frustrated me further because it felt as if I was an 8-year-old trying to read Proust. There were the days when deep thoughts eluded me, and I wasted the hours mindlessly channel-surfing because I could handle no more.

Words, words, words. They are our lifelines to the outside world. They are our method of communicating desires and needs. They form the building blocks for unique thoughts. Ever since I learned how to read, I’ve been obsessed with the written word. Like Engel, I am a book hound, usually reading at least two books at any given time.  I can’t remember a time when I haven’t wanted to read or to write, endlessly searching for the perfect word or the most delicious turn of phrase. My darkest days of illness were when I feel cut off from this lifeline. Temporarily losing words petrifies me. Losing the ability to fully absorb others’ thoughts and ideas through the written word, like Engel, or the ability to express my own, like Iris, would lead to certain death in a large part of my soul.

Despite the fears and anxieties they stirred within me, the stories of Engel and Iris are both incredibly heartening and inspiring. They should encourage each one of us to make the most of what we have while we have it. You never know if, when, or for how long it might be stolen from you. The burst of lucid, inspired thought captured forever in time is truly a cherished gift.

@2010

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Filed under Neurological Disorders