Memoir: for decades, I made my living as a poet. Then I was diagnosed with Alzheimer’s—and found myself at a loss for words
I don’t remember exactly when I stopped remembering. For years, I’d find myself pausing in the middle of sentences, unable to summon the right phrase. I was in my 60s: I figured it was just a part of getting older. It was only five years ago, when I met the woman who would become my wife, that it became apparent something was wrong. We fell in love, and it was wonderful. But she noticed that I was missing appointments and often needed things repeated to me before I understood. Love made me conscious that I was no longer quite who I’d been, and I began to seriously seek advice to find out what was happening to me.
Less than two years ago, at age 71, I received my diagnosis of lopogenic aphasia caused by Alzheimer’s disease. In neurological terms, it’s a type of atrophy in my temporal cortex that causes me to lose my vocabulary. By the time I was diagnosed, the disease had progressed beyond those initial flickers of memory loss—I was forgetting events, discussions and names.
What is it like to be me, a poet without words, a poet who can’t speak? I know what I want to say, but I can’t say it. Often I have no way of telling anyone how I feel, and sometimes I find myself unable to understand the normal speech of other people. I think of a word, then I stop thinking of it, then I can’t remember it. I get a brilliant idea, and then it’s gone, instantly.
When I can’t think of a word, I feel like I can’t talk at all. Some time ago, I couldn’t remember the word “pizza.” I kept thinking that it started with an S, but that didn’t seem right. Sometimes I misuse a word, or replace it with its opposite—chocolate for vanilla, for instance.
I have some shame. I don’t speak very often, unless I know I can get the words out. I avoid making phone calls and going to dinner parties. Noise bothers me more than it used to. It interrupts my concentration and makes me uneasy. My wife mostly takes care of our arrangements—travel, household management, appointments. Most of my socializing is on Facebook: oddly enough, repartee comes quickly and easily when I’m typing.
As part of my treatment, I participate in exercise sessions. They’re part of a research project to test whether vigorous physical activity—in this case, three weekly one-hour sessions on a stationary bicycle—may help create new neural connections and slow the decline of my pitiful brain. The exercise is mindlessly boring, but worse still are the demands of the research, which I find demeaning.
Recently, I was leaving exercise class, getting ready to go home, when a young research assistant ran after me and insisted I start pointing to pictures on a chart—a cat, a toaster, a frog, a chair, an elephant—and tell her what each object was. Yes, people keep telling me to do this, do that, do this, do that—they need me to perform embarrassing kindergarten-level tests because they want standardized measures of my cognitive function, before and after the exercise periods. I’d like to say, “No, no, no, I’m not going to do that anymore.” But I continue because my wife insists. She says she needs to see me putting in an effort, because she puts in an effort living with me.
Perhaps I’ve waited too long to say something important: despite my condition, I am happy. I have many joys. My wife and I have a strong marriage. I had a wonderful time helping to renovate our beautiful house on Havelock Street in Dufferin Grove, and I feel blessed living in it. I love the cat, the bird feeder, my wife’s cuisine, seeing movies.
My greatest joy is reading. Though I’m unable to remember as much as I used to, I savour the immediate experience of reading more than ever. I recently heard that Joseph Boyden used to like Robertson Davies, so on my way home from an exercise class, I stopped at Balfour Books on College and bought several of his novels. When I got home, I suddenly realized I already had all of Robertson Davies’ books on my shelves—I’ve read them and didn’t remember. A few weeks ago, I picked up a copy of a book I wrote, a travelogue called An Innocent in Scotland. I hadn’t looked at it in a long time, but my wife asked me to read it to her. That gave me a lot of pleasure.
So far, I’m still able to write. I do it slowly, making sure that I’ve done it well. I think about it, and how I would read it, and finally I get it to where it’s supposed to be. This is what my neurologist refers to as “the mystery that only David understands,” and even I can’t really explain it. In the last two years, I published three books: a poetry collection, a memoir of travelling with my father, and a book of haikus and tanakas. I’ve also completed 102 sonnets, which I hope to publish soon.
Yes, I would like to speak. I’d love to be my old self again, but no one knows for sure where my disease will take me. Maybe I’ll never write again after today. But…
Why do we worry?
We’re only leaves on a tree.
Let the tree worry.
David McFadden is the winner of the 2013 Griffin Poetry Prize. His new collection, Shouting Your Name Down the Well, is available now.
Email submissions to firstname.lastname@example.org