This post was produced in partnership with Bloom, a literary site that features authors whose first books were published when they were 40 or older.
We are a storytelling species, we humans, circled around our archetypal fire, backs to the impenetrable dark and lurking beasts. Before there was fiction as we know it, there were metaphors and myths to help explain where we come from and where we go. Storytelling has always been an antidote to the fear of what we don’t know or understand.
Our litany of fears hasn’t changed much over the last 50,000 years or so. We fear death, illness, pain, infirmity. Now that we live into our 80s and 90s, we can add to that list the fear of losing our faculties.
On the upside, without this innate horror of death and decline there would be very little art, and surely not much literature. It’s human nature to want to defang the beast, but also to poke it — to see what our fears are made of. And people want stories — need them — more than ever, it seems. Popular storytelling programs like The Moth and This American Life, for example, reassure us that we’re in this together. We’re all going to die; let’s go from there.
There is a shadowy twin to that bit of reality: most of us will also find ourselves bearing witness to someone else’s final days — days that in fact often turn out to be weeks, months, years. Parents, partners, relatives, friends: someday you will watch a person you care about suffer. It’s not so much that last shovelful of dirt on the grave that should terrify us, but emptying all those bedpans.
Eileen Tumulty, the central character in Matthew Thomas’s debut novel We Are Not Ourselves (Simon and Schuster), has no time for worrying about what she does or doesn’t fear. Born in 1941, to Irish immigrant parents in Queens, Eileen is a clear-eyed striver. Wary of the ways drink and habitual sorrow encumbered her own parents, and confident that she alone is responsible for the life she wants to lead, she concentrates on moving out and up. She works and saves, goes to nursing school, and refuses to succumb to the charms of the local boys, until a friend fixes her up with Ed Leary, a serious young man with a promising career in neuroscience. Within the year they’re engaged. They move from drab Woodside to Forest Hills — in 1967, a diverse and thriving neighborhood — and have a son, whom Eileen impulsively names Connell after a visiting friend leaves a copy of Evan S. Connell’s Mrs Bridge on the hospital nightstand: “[I]t sounded more like a last name than a first name, like one of those patrician monikers the doctors she worked with often bore, and she wanted to give the boy a head start on the concerns of life.”
Eileen understands how the American Dream works: You leave as little as possible to chance. You save your money, educate your children, and take every opportunity that presents itself. Ed, on the other hand, turns down a tenure-track job at NYU because he’d rather teach low- and middle-income students at Bronx Community College, and prefers to keep teaching rather than move up as assistant dean. He’s content in their Queens neighborhood, even as it becomes rougher around the edges, while she wants a home in Bronxville, an upscale Westchester suburb.
Ed keeps doing the work he loves, but Eileen eventually gets her house, overspending on a rundown fixer-upper. Around the time of their move, however, Ed begins to act erratically, lashing out at Connell for imagined infractions, mixing up his students’ grades, abandoning home repairs in frustration. Eileen does her best to help him, but eventually decorum and denial can’t compensate for Ed’s inability to function. She takes him for a neurological workup — even at the doctor’s office swinging between protecting the man she loves and desperate disbelief:
“Tell me something. Do you know who the current president is?”
If he wanted to insult him, this was a perfect way to do it. She almost wanted Ed to answer sarcastically or deliberately incorrectly, but she didn’t want the doctor to have the satisfaction of writing it down on that little pad of his.
Ed sat with it; maybe he was coming up with a witty riposte.
“I know it’s a Republican,” he said, “I know that.”
The diagnosis is early-onset Alzheimer’s; Ed is 51. And so the game changes for the Learys. The American Dream will only take you so far, Thomas proposes, underscoring the novel’s unmistakable subtext: this could be your story. It could be mine.
A few days before Christmas 2006, my mother slipped on an icy step and hit her head. She had just finished giving an English lesson to a young Japanese couple; they saw her fall, called 911, and waited outside with her for the ambulance. She blacked out only briefly, and the damage was minimal: a small skull fracture with no cranial bleeding, some spinal trauma but nothing broken. She received immediate and excellent care, and her prognosis was good.
Mom was already what I thought of as ditzy — a little absentminded, sometimes silly, but nothing you wouldn’t expect from someone just short of her 79th birthday. Until a few of years before, she had been commuting into Manhattan daily, working as a bank president’s assistant, and, once she retired, she began teaching English at the local chapter of Berlitz. She read widely and critically, painted and drew, cooked adventurously, and loved going to galleries. But some bad convergence of side effects began to take its toll almost immediately after the accident. The head injury, the inactivity, and who knows what else, slowly shut her down.
Her deterioration was typical of all types of dementia: Periods of no change punctuated by small disasters that would reshuffle the deck, forcing us to scramble for solutions. There was no predictable pattern, except for my own near-miraculous capacity to be shocked and dismayed every single time. It wasn’t that I expected her to get better. I just didn’t imagine she’d get so much worse so quickly. It took me years before I could stop thinking, If she would just pay more attention…
Though there are countless books, websites, and support groups available, I’ve turned to friends and family — or rather, we’ve turned to each other. According to the 2014 Alzheimer’s Association Facts and Figures report, one in nine people age 65 or older has some form of dementia; for those over 85 it’s closer to one third. Those numbers translate into a lot of us trying to make sense out of something so senseless. And what we do, for the most part, is tell each other stories. We allow flares of black humor, we invent our own metaphors. This is, I say, like trying to fix a leaky boat in the middle of the ocean. This is, my friend says, like making pencil lines lower and lower on the doorframe. This is, another friend writes, a process of mourning by degrees. Canceling the Netflix account because my detailed DVD-player instructions are no longer enough; taking away the car keys; removing the knobs from the stove. A housekeeper, part-time help, a live-in aide. Each new development is like entries in the world’s worst baby book.
Thomas’s portrait of how the disease cuts through lives is on the mark and sensitive; he gets it all right, and anyone who has lived those cycles of denials and acceptance will recognize herself, or someone else. In the period before Ed’s diagnosis, when both he and Eileen are convinced that they just need to try a little harder (If she would just pay more attention), Eileen tells herself,
He would listen to her. He had always been good at listening to her. As he got older and more fixed in his fears and habits, she had to shout a little louder to be heard, but once he heard her, if he could stomach what she was asking for, he did what she asked…He needed to regroup, to see new possibilities, to think bigger than ever. If there was anything she could help him with, it was thinking big.
Ed’s own resolution, whether for her benefit or his own — Thomas never approaches the story from his viewpoint — is that “I’ve been meaning to spend more time attending to my needs…I’ve had a cloudy head for a while. I’m trying to get back to basics.”
Eileen keeps him at home as long as she can, though a life of careful planning can’t help her here:
She spent all morning [at work] worrying about him screwing it up. He needed perfect accuracy to pull it off. If he hit any button other than start, he ended up gnawing on frozen manicotti or choking down cold beef stew. She came home to the time unchanged on the microwave, half the meal on the floor, a broken plate under the table, the Times intact in its sleeve.
Even when he is eventually moved to a care facility, she keeps tight control of her own vision — all that’s left to her:
She wasn’t visiting. What she was doing was seeing her husband after work. It was simply a part of her day. She was showing them that Ed might be there with them instead of home where he belonged, but nothing else had changed…They had no clue what kind of man had fallen into their lap, but she wasn’t going to explain it to them, because they didn’t deserve to hear it.
It’s a shape-shifter of a disease; as soon as you understand what you’re dealing with, everything changes again. Who can begrudge Eileen her excuses and her bargaining? It’s hard to hit a moving target.
People tell me what a good daughter I am, how attentive and patient. I am not, I want to say. I lean too much on my older sister, whine about losing my weekends, dread changing my mother’s Depends in restaurant bathrooms. But I love her enormously, and I show up. Still, I’m not a natural caregiver. I was a good mother, but that was all animal instinct. Otherwise it’s not part of my makeup.
I was, frankly, spoiled rotten as a child, never really encouraged to look outward. This was partly because it was the ’70s — awful as the nickname is, the “Me Generation” isn’t too far off the mark — but also because of the way our family worked. My mother compensated for her own hardships — she grew up during the Depression with an ill and often absent mother, her first marriage failed, and her second, to my father, was difficult as well — by throwing herself into mothering me, the much-adored late-in-life baby. I wasn’t literally an only child, but I was raised like one. “Make sure you take care of yourself first,” she always advised me. And I did.
My father’s health began to fail when I was barely into my 20s, probably the result of a series of mini-strokes that, coupled with diabetes, progressively disabled him and killed him at age 69. I say probably because I don’t know and didn’t push for more information; I was just out of college, with a new husband, a new baby, and, soon, a new divorce; I had troubles of my own. My dad and I had butted heads when I was an adolescent, especially after my parents divorced, and a whiff of that still clung — which is to say I was mostly self-involved and selfish.
Fortunately my presence wasn’t needed. My father’s partner quit her job and cared for him cheerfully, tirelessly. She was — and is — unfailingly kind to me, effectively letting me off the hook for all my deficiencies. But years later, the work of caring for my mother would bring everything rushing in: how emotionally absent I was in my dad’s last years, how thoroughly I failed him. I carry that with me always.
And this is what I found deeply admirable about We Are Not Ourselves. Even more than the novel’s scrupulous depiction of Alzheimer’s, I appreciated the fact that neither Eileen nor Connell is a natural caretaker. They stumble through Ed’s first symptoms, his diagnosis, and the long-term management of his illness in very human, recognizable ways. They’re never saints; never martyrs. They have no choice but to play out the hand they’ve been dealt, and they’re not always graceful about it.
For all Eileen’s experience in caring for others, she has never quite mastered the art of compassion — the luxury, she would say. Having been scornful, as a teenager, of her mother’s late-in-life immersion in AA — “the down-and-outers…who’d wrecked their lives and slipped into a spiral of regret” — Eileen believes the issue “wasn’t negative thinking, it was too little positive thinking on the part of everyone around her.” Ed’s illness forces her into something resembling a Twelve-Step program of her own, with its requisite admissions of powerlessness. But she never quite loses her hard edges; they’re what’s kept her going all these years.
And poor Connell is a mess, his protracted middle-class adolescence in constant opposition to his father’s needs. He stays out late or doesn’t come home at all, leaves a barely functioning Ed home alone so he can go out with friends. He’s not callous, just conflicted and a bit spoiled. Eventually he rises to the task, but we wince — in my case, in sympathy — at how long it takes.
I didn’t know enough, when my dad became ill, to fear my own selfishness. These days, though, the worry follows me around. I’m a good daughter now, while my mother still recognizes me, while she’s still at home and we can sit on her couch and look at pictures of the great-grandbabies on my phone. But what about the next phase, and the ones after that? Will I do the right things? Will I still be able to resurrect my love for the person she’ll become, and will I honestly feel it?
It would be reductive to call We Are Not Ourselves an “Alzheimer’s novel.” Among other things, it’s an elegy for the middle class in urban America, and for the social mobility we insist on believing in. And it offers a lively portrait of a changing New York. Still, Matthew Thomas does his readers a great kindness in giving us Eileen and Connell’s complicated love for Ed, their good intentions and their mistakes: he offers up benevolence in the form of a story. Sometimes you just go through the motions. Sometimes you just show up.
We Are Not Ourselves isn’t literary group therapy. But it spotlights a dark place that most of us can count on visiting at some point — and shining that light on our collective fear is what a novelist, often, does better than anyone.
Click here to read Bloom’s Q&A with Matthew Thomas.