Visitors know they've found the correct address for David McFadden's home when they read a sign posted on the front door: Poetry Spoken Here.
But on a recent fall day, the Griffin Prize-winning poet is not interested in regaling his guest with stories from his prolific writing career (he's written more than 35 books). Rather, seated beside his partner, visual artist Merlin Homer, he shares the news that the words he has laboured over for 60 years are now deserting him.
Diagnosed in May, 2012, with logopenic aphasia (a form of Alzheimer's disease), McFadden has been struggling to find the right words, often meaning to say one thing but having the opposite come out, or stopping mid-sentence as he suddenly loses his train of thought. "At first, I didn't pay it much thought because I thought it was just me, and I've always been odd," jokes McFadden, 73. "But in the last two years, [the memory loss] has become way more noticeable to me, and to the people close to me."
Despite his increasing language deficiencies, McFadden has written voraciously – he recently delivered 102 new sonnets to his publisher – and with his trademark insight and flair, often finding wry humour in the banal routines of everyday life. And that includes the 2013 Griffin-winner, What's the Score?, a 146-page poetry book noted for its deceptively plain-spoken style, all while battling the creeping, incurable disease.
His continued proficiency with the pen is remarkable in its own right. But more so, his story provides a fascinating glimpse into how, with perseverance and lots of help, a person can maintain the passions that have buoyed and sustained them all their lives – no matter how directly they appear to clash with the characteristics of their illness.
"By going public, he is showing others that Alzheimer's doesn't automatically mean the world comes to an abrupt halt," says Dr. Carmela Tartaglia, a neurologist in the Memory Clinic at Toronto's University Health Network who is working with McFadden. "When people and their families get the diagnosis of Alzheimer's, they automatically think they're no longer going to be able to do anything. That's not true. He is still able to do a lot."
On this day, McFadden is having trouble articulating his initial reaction to being diagnosed with an insidious disease that affects 747,000 Canadians, a figure the Alzheimer Society of Canada expects to rise to 1.4-million by 2031. So with his permission, Homer, 70, fills in the blanks.
"I think he thought there would be a quick fix," she says. "I was the one that cracked up at the diagnosis, watching his every move."
But there is no "fix" for Alzheimer's, Homer points out. Last year, a study by the Alzheimer Society of Canada estimated the total direct cost (medical) and indirect (lost earnings) of dementia is $33-billion annually – a figure expected to skyrocket to $293-billion by 2040. The study also highlighted the enormous pressure on family caregivers, who in 2011 spent more than 444-million unpaid hours looking after someone with the disease. By 2040, the estimate is a staggering 1.2-billion caregiver hours a year.
Asked if he has slowed down the number of hours devoted to writing poetry, or if he has to call Homer for help to find a word that's escaped him, McFadden – who seems confused by the questions – can't say. His ability to write so beautifully seems to be a mystery to everyone – except to him. It is still almost intuitive.
Perhaps McFadden's creative productivity is partly a function of ingrained habit. For years, he's sat for hours each day at a small desk in his west-facing office. He just shrugs when asked to describe changes wrought by the disease to his daily writing routine. "I've never had trouble pumping it out," he says with a laugh.
Homer tries to help: "David doesn't get stymied when writing. He says he writes slower than he used to, and hesitates over the spelling of homonyms (know and no, for example)," explains Homer, his partner of four years. "But I've found only the odd grammatical error. And he's great at directions and can find his way around better than most people," she says, adding that she gives McFadden a daily dose of Bach flower remedy (recommended by a naturopathic friend) to help combat the fear and anxiety that sometimes strikes.
The rigour and discipline that defined his 60-year writing career may have staved off his illness, says Tartaglia, "but frankly there is still so much that we do not know about this disease. Far more research needs to done into Alzheimer's before we can understand the intricacies of this formidable disease, before we can hope to find a cure."
"The reality is David is no longer in the phase of mild cognitive impairments, and things are going to get worse…. But we believe keeping the brain active is good for the brain because you are building connections. I tell people, take a course, and engage in conversations which are very stimulating for the brain. Physical and social activity are also good."
McFadden feels his illness catching up with him. He discloses that he recently stopped his rigorous writing routine. And he confides that he's thinking of stopping altogether. "I think it's time for me to quit. I feel as if I've gone far enough."
Homer watches her partner patiently, then interjects, "I have to say we've been through this before, quite a few times."
McFadden looks to her, and chuckles, "Oh yes. I forgot. I'm always forgetting."
Homer and McFadden, who also has lymphoma and thyroid cancer, consider themselves among the more fortunate Alzheimer's families because he is still functioning in many areas. Their home looks, even smells, like a writer's, with floor-to-ceiling walls of books and worn, stuffed furniture that invites guests to sit and read a while. And these days, McFadden's preferred brain exercise is reading. He attacks it as tirelessly as he did his writing.
For hours, the couple sit together while McFadden reads aloud to Homer, changing his voice to match the characters.
"He'll get this book in one hand, and he'll have his other hand around me," says Homer. "Every once in a while, his intonation of a sentence won't be right and he'll go back and get it until it's perfect. While reading out loud he has access to all the syntactic structure, all the vocabulary that he often doesn't have when he has to produce it on his own. If his mind is focused you wouldn't know he had this disease."
Later, McFadden heads out into the garden for a photograph. Homer gently reminds him to take off his slippers and put on shoes. He turns and gives her a grateful, impish smile.
The scene evokes a poignant line in one of McFadden's prize-winning poems: "The greatest sadnesses are forever those; that make us look back with a silly smile."