Anatomy of Mom’s Brain

Jeff Porter

Three months ago, I phoned home to say hi. Routine check. It was mid-January in Buffalo and I’m in Arizona feeling guilty because of all the sunshine. Hi Mom, how’s the weather? A pause and then this: I’m getting over some from here and everything is fine he’s very good everything was good it’s ridiculous I read it made everything up so everything is fine I don’t know. Something not right. It’s ok, I don’t know what happened, no problem, honey, I’ll go downstairs, the dryer. I’m fine. Nothing bad. A problem, not bad. I’m fine. Everything is ok. No problem.

Yikes, I thought. I didn’t know what to say. I stuttered feebly while Mom descended into gibberish. Lights began flashing in my head. I called my sister in Connecticut. Mom sounds really weird, I say. Oh dear, my sister says, I’ll phone her, which she did and then calls back and says we’re in trouble, lights flashing in her head too. So it’s 911 and a state of emergency.

To see Mom’s reliable wits vanish with one phone call, that was unnerving. A mild stroke isn’t exactly catastrophic but it will have a real impact on your cognitive wherewithal. Mom’s spunk rested on her smarts, her sense of control over the eventualities of her little universe. For the first time in her life, she can’t trust her brain. She doesn’t feel normal. She loves the idea of normal. She loves business as usual. For her, a normal person reads a lot, pays her taxes on time, keeps the kitchen spotless, and never votes for Republicans. She has (or had) a good vocabulary. She even read Terra Nostra by Carlos Fuentes. It was weird, she said, but I finished it, all eight hundred pages. She always finishes her books.

But things have changed. Neurologically speaking, Mom’s not quite the same. As the stroke happened on the left side of the brain, her speech and language centers are now totally screwy. Expressive aphasia is the polite term for this, the partial loss of basic communicative skills. Words no longer come automatically, seem to have flown the coop. For those with aphasia, speech becomes “effortful.”  The work is frustrating, if not depressing. But Mom is motivated and knows what she needs to do. Get that brown (brain) going, she says.

As I understand it, the language center of the brain resides in the left hemisphere, in the inferior frontal cortex. That’s in the neighborhood of the left eye. Aphasia is one result of injury to this side of the brain, from a stroke, concussion, hemorrhage, tumor, dementia. At first, I couldn’t even say the world toothbrush, Mom tells me. So you say the wrong word, use vaguely connected words, or switch sounds altogether. I need a hair coat, Mom says. You might even resort to nonsense words or neologisms. Interestingly, it’s not because missing words have been erased. It’s just that the neural pathways have been screwed up. It’s like road damage. The words are still there but the familiar routes to retrieval have been blocked.

My sister and I alternate our visits to Buffalo. It’s my turn. Mom is looking out the kitchen window at a two-seater patio chair. A flowerpot fell over, scattering dirt. The church needs cleaning up, she says. The “church”? Apart from forgetting words, the aphasic brain is relatively inventive when producing proxies. Church for chair; stork for stroke. In each case, the first syllable has been activated more or less successfully, but the excitation craps out on its way to other parts of the word. There is a transmission deficit, say experts, and so associated sounds come to the rescue, however far outside the intended code. These are near misses. You would think that would be sufficient for getting one’s point across. The rules of normal discourse are unforgiving, though, with little margin for error. They demand an exactitude only well-oiled brains in top form can provide. For Hippocrates, we peak by the age of fifty-six. Mom is ninety-one.  She has high blood pressure, is borderline diabetic, and doesn’t get much exercise. Her eating habits aren’t terrific, and she smokes from time to time. Seven years ago she suffered a heart attack, but two stents later she was firing on all cylinders. Since that scare, Mom has seemed more spirited than anyone in the family.

It's been four months since her stroke and right now a therapist is sitting on the other side of the kitchen table from Mom. Dessarae is a speech-language pathologist in Buffalo. Typically, she sees patients with expressive language disorders, she explains, like autism, cerebral palsy, and aphasia. Some of those she treats suffer severe symptoms, can’t talk but only drool. Swallowing or dysphagia is a serious issue for stroke victims, she adds, but that’s not Mom’s problem. Hers, basic aphasia. Each year there are eighty thousand new cases in the US. Altogether over one million people suffer from aphasia. The more therapy the better, says Dessarae.

Dessarae is friendly, competent. She’s wearing a wine-colored two-piece scrub set, a surgical mask, and a gray, zippered hoodie. Her dark hair is bunched back into a nubby ponytail. She’s masked up so all I can see are two large, enthusiastic eyes and carefully groomed eyebrows. The therapist and Mom begin a series of verbal exercises with me looking on. I feel like I’m snooping so I tell Dessarae the idea of rehabbing a brain that’s not working right is really interesting to me. Ok, she says. The deeper fact is I’m a language guy. The fate of words, especially in the brain, really matters. (No pun intended.)

I washed my hands with a bar of . . . says Dessarae. Soap, Mom says, completing the sentence. Dessarae’s voice is cheerful and encouraging. I took the dog for a . . . Mom says walk. For breakfast we had . . . for breakfast we had, let’s see, um, oatmeal. Yes, very good, says Dessarae. I’m wearing my favorite  . . . Mom says, um, today, sweater. Beautiful, good work, says Dessarae.

Mom is filling in the blanks like a six-year-old. My goodness, I say to myself. It seems so rudimentary, like starting life all over again. Every word is a new start. I can have a normal conversation with Mom but I do a lot of what she is doing right now, filling in the blanks. A bit of empathy and contextual sensitivity go a long way. She says we need grass before the talls, and I know she means it’s time to contract a lawn service for mowing. It’s like shorthand. I get it, my sister gets it, but not many others.

I put the clothes in the . . . says Dessarae. I closed? Mom says. I put the clothes in the . . . says the therapist again more deliberately. In the closet, wait a minute, we close. Yes the closet, says Dessarae, coming to the rescue. For Mom, it’s a tossup, close, clothes, and closet. In the aphasic mind, the phonemic similarities among words blur their semantic differences. Language is all about precision and variation—no meaning without that—and the rule of difference is weakened by aphasia thanks to potholes in the neural network.

Ok, Petrina, says the therapist, name for me seven articles of clothing. Ah, clothing, ok. Mom sits on the edge of her chair and leans forward, her elbows on the table. She is trying her best to do well. It’s very important for her to get better. She wants to be a capable ninety-one-year-old again. Ok, Mom says, a jacket, a blouse, slacks, socks, um, panties, brassiere (one more, says Dessarae), um, oh, sneakers. Beautiful, I love it, says Dessarae. Name for me seven animals. Ok, a cat, a dog, a giraffe, elephone (elephant, ok, says the therapist), lion, a tiger, a snake. Beautiful, says Dessarae. I want to tell them that Humpty Dumpty would pay extra for elephone, but nobody around here likes literary references. So I keep mimsy mum.

Dessarae says she currently handles about five cases a day. That sounds like a full workload, I say. We’ve been slammed by COVID, with lots of people waiting for help. Stroke, swallowing, respiratory issues. So many complications with patients who are post-COVID, including cognitive and memory problems. In your mom’s case, it’s standard aphasia training we’re doing. We work on her understanding and expression. So word and picture games. There’s opposites and pairings too. The idea is to call upon the undamaged parts of the brain to help with the work of word-finding. Kind of like recruiting neurons. We’re looking for work-arounds, ways to bypass the damaged areas of the brain.

All of which makes sense: fire up the brain’s extensive network.  Still, I fight the urge to rewrite Mom’s sentences, as if I could restore her cognitive well-being with a few edits. Mom says I would like to go for a fish far in Williams close. You mean, I say, a fish fry in nearby Williamsville? Yes, that’s what I just said. Ok, a fish fry. Sure. Pass me the pilling roll. Mom’s making an apple pie. You mean pass me the rolling pin, I ask? What do you think I said, she says. Right, I say, the r-o-l-l-i-n-g p-i-n. I say it more deliberately this time. I’m turning into a therapist. Mom says milkmarriage while watching a movie. I immediately put things right: the woman is talking about a miscarriage, I say. Yea, I know, milkmarriage. No, miscarriage. I feel like a robot. I can’t help myself. The fact is you’re not supposed to correct people with aphasia. Downplay errors and avoid insisting on perfect word choice: that’s the advice for caregivers. Mom says she’s crossing her leaks that her faucet will stop dripping. I bite my tongue. Luckily, Mom puts up with my corrective impulses.

Mom comes from a clan of hot-tempered Sicilians. I sometimes wonder about the consequences of that bloodline, genetically speaking. We all have our share of hypertension. It’s the family heirloom. Mom’s mom died of a stroke in her early sixties and later her dad of a heart attack. This was before the advent of blood pressure meds, which weren’t widely available until the 1980s. Grandma’s BP, like FDR’s, was through the roof. Mom’s early life was full of ups and downs, so unpredictable as to be breathtaking. As a youngster, she hoped to normalize things with a name change. Call me Pat, she told everyone. It was simpler, sounded more American, rolled off the tongue nicely. Petrina was too foreign sounding. Her sister Josephine did likewise, became Joyce. It was so easy to change your identity back then, Mom said, but not so easy to change who you are or where you came from.

A family of Sicilian immigrants living on the east side of Buffalo is who they were. Back then it wasn’t so cool to be Italian, let alone Sicilian. Ignorant, dirty, dark-skinned peasants prone to crime and violence—that’s how the New York Times described Sicilians. Mom is a survivor. She survived American bigotry, survived growing up in a crazy, unstable household, survived spinal meningitis, the Depression, her violent father. None of that was easy, I’m guessing. A Sicilian witch once told her she would not make it past twenty-one. That was on the day she returned home from the hospital after a near-death experience. The whole neighborhood celebrated—it was a miracle to pull through spinal meningitis. The old lady scared the shit out of her, though. She pointed her skinny, crooked finger at me, Mom explained, and said morirai presto! You’ll be gone soon. Mom often talks about the past, thanks to her fine memory. I listen, I dutifully take notes. I hear the roar of time.

I’m beginning to age myself and am anxious. I look in the mirror. Fine lines and wrinkles I see, blotches here and there, loss of muscle mass, lower back issues. I look around and wonder. Somehow I have arrived at this place. My brain is wonky. I forget words, feel asymmetrical most of the time. The whole world seems aslant. It took me by surprise. My wife gets nervous when I drive. Keep your eyes on the road, she says. I’m easily distracted. I’m vulnerable to wayward thoughts. The fact that large egg sacs dangling from a spider web in the garage look like freeze-dried garbanzo beans takes hold of my mind, won’t let go. Unfinished sentences fall to the floor like cigarette butts. There is this other me—the old guy—dying to emerge. I’m not ready, I say, go away. I even have a name for the intruder, Leonard Spector. Lenny, I’m not ready, come back another time. I see people in their mid-thirties, chins up, poised, reasonably unperturbed. Astonishing, I think. I chat with dogs and slumbering cats. They seem to understand, but you never know. If you look closely at an animal, the German writer Elias Canetti once said, you get the feeling that a man is hidden inside making fun of you.

A friend from college, Eddie Mace, died two years ago of a “massive stroke.” He was in perfect health. We once hitchhiked from Buffalo to Boston with less than ten bucks between us. I can’t say we painted the town but we snuck into a Red Sox game and returned alive. Eddie was a nice guy. He died swiftly and with no warning, in the middle, probably, of a lively discussion, waving his hands to and fro. His mind simply shut down. Did Eddie sense something terribly wrong? Did he feel the microprocessor in his brain lining up new information and the very next moment going kaput, not enough even for a whisper? Eddie’s stroke disturbed me because we don’t expect that of the brain, shutting down like that.

I’m not eager to face any of this, strokes, broken brains. It’s scary—like getting bit by a rattlesnake. I asked Mom what it’s like to be really old but she only rolled her eyes. Being old is a mystery, partly because there are so few reports from the field. Society looks on old age as a shameful secret, wrote Simone de Beauvoir. We maintain a conspiracy of silence. Aging is thought by the young to be catastrophic, like plunging over Niagara Falls. It looms ahead. Stereotypes about old age are as absurd as they are false, but weird ideas about aging easily prevail in a culture that exalts eternal youth. No one, however, can escape old age, wrote the poet Sappho. It is our lot in life. Not all the skin-care products in the world are going to prevent that.

I would wager that some of the prejudice directed at old folks is rooted in faulty assumptions about the brain. If in pop culture old types are thought feeble it may be owing to how we used to think about the brain, that it stopped growing in adolescence. By middle age, it was all downhill. First, cell damage, neurons dying off in greater numbers, never to return. Second, brain shrinkage, blood flow decrease, and so on. This view provided a stark picture of the brain and prompted many to equate aging with senescence. Worse, it suggested that neurological injuries were irreversible. If something went wrong in your brain, say you lost your sense of balance, it was kaput. You became a wobbler for life.

We are told that’s no longer the case. Brains aren’t hardwired like computers but possess the extraordinary capacity to generate new cells, reconfigure pathways, and refashion new connections. Phew, I say, good news for Mom and a whole lot of older types. This new model suggests that the brain adapts to changes in the environment and our behavior, because what we do with our brains, whether driving a taxi or fingering a cello, exerts lasting pluses and minuses in the growth of synaptic connections. The more the brain is worked, the more vigorous and connected it becomes.

Life is tough on the brain. My dad died of Parkinson’s Disease twenty years ago. That’s when I began reading about neurology—the basal ganglia and all that—and now Mom has had a stroke. On to neuroplasticity.  So I read The Brain that Changes Itself, where I found the story of Cheryl Schiltz, a thirty-nine-year-old woman who awoke one morning to find that she could not stand without keeling over. Cheryl was in a state of perpetual free fall, thanks to a severe inner ear infection that damaged her vestibular system. For Cheryl, life became impossible. To navigate she had to hold onto the wall and even then she fell. There was no relief. “I had to crawl,” she says. “It was like being extremely intoxicated. I was scared to death.” Sadly there was little hope. It’s the late 1990s and the conventional outlook is grim. Nothing can be done. The neural circuitry responsible for processing balance in the brain has been irreversibly damaged.

Desperate, Cheryl let a team of maverick neuroscientists fit her to a weird hard hat wired with sensors. The helmet was connected to strip of microelectrodes no larger than a postage stamp, which was inserted in her mouth. Inside the hat was an accelerometer that recorded Cheryl’s movements, relaying degrees of unevenness to the widget on her tongue. The device would buzz when off-center, and Cheryl would right herself. These corrections were sent to the brain for decoding. The effect was to create a novel pathway in the brain, Norman Doidge writes, to the area that processes balance. Cheryl wore the hard hat for a few minutes each day while the device triggered the sensory regions of her brain. Gradually, Cheryl became increasingly more stable and months later entirely regained her balance. The woman who wobbled so badly she walked with two canes had regained her stability. No one expected this. The artificial feedback system had somehow stimulated Cheryl’s brain to rewire itself, to recalibrate its circuitry.

Maybe we’re not doomed to cognitive failure as we age. If adult neural circuits can change, then there is good reason to hope that people with strokes and brain injuries might be able to form new connections when properly stimulated. Hope for all of us late-middle-aged types. What we all want is more connectivity and network integrity. Especially Mom. There are gaps in her pathways, and so her vocabulary is spotty, which is why speech therapy makes so much sense for someone like her.

Unlike me, Mom is not afraid of aging. She is more or less comfortable with the radical ambiguities of old age, except for loneliness and boredom, though she wouldn’t put it that way herself. She is an old school realist with an unbroken spirit. She’s very practical. If her appliances are in working order and the snowplow guy shows up, she’s ok. She is afraid of ageism, though, something only recently discovered thanks to her stroke. She is afraid of being laughed at because her words come out wrong. She says apparition for partition. She says stork for stroke. Elephone for elephant.  I laugh myself but not at her. I think the human condition is pretty funny—sad but funny—and she understands that, I think.

Mom seems aware, however vaguely, that there is an existential side to aging that has little to do with clock time. It’s a more complicated dimension where one reckons with vulnerabilities. And that’s not easy. Her biggest challenge is that her stroke has turned her into an object of care, someone with a disorder who needs to be managed. A caregiver herself for twenty years while my dad suffered through Parkinson’s, this is brand new. Adjusting is hard. Mom doesn’t like to be seen as a victim. It’s humiliating, she says. She’s exposed more than ever, a fragile being who has to rely on her kids, which compromises her old sense of self.

I’m back in Buffalo for another visit. It’s my second since Mom’s stroke. Today she is seeing a new speech therapist and I ask to tag along. Well, if you really want to, she says. The new therapist, Elaine, has serious-looking books on her shelves: Vitalstim Therapy, Rehabilitation of Memory, Radiology of the Esophagus. From what I can tell, Mom is performing noticeably better, from a cognitive point of view. I’m getting betty, as she says in her way. Notebook in hand, I observe the two women. I’ve decided to write an essay about Mom, but I keep this to myself. Elaine sits behind a cluttered desk in a small untidy office. The room is windowless. She wears a messy bob cut with bangs and a black floral dress and cardigan. I like her no-nonsense approach. She’s practical and unsentimental, if not a little tough.

Elaine gives Mom a blank sheet of white paper. Draw a circle, she says, anywhere on the bottom half of your paper. Mom looks at the bare sheet, not sure what to do. On the circle of the body? Mom asks. Draw a circle on the bottom half of the paper, Elain instructs. Ok, on the circle of the body, she says inscrutably. In some visceral way Mom sees the paper in flesh-and-bones terms and the circle as a body part. She is engaged metaphorically with the exercise, not so much by choice but by necessity. This is how her brain works. It’s not optimized for linear processing. There are gaps in the matrix which must be leapt over. Draw a circle anywhere on the bottom half of the paper, Elaine repeats. Mom’s pencil drifts to the upper right corner of the paper. Nope, you’re not on the bottom, Elaine warns. Any part there is like a shoulder, Mom says.

Mom has gone Whitmanesque but the therapist will have none of it. BOTTOM HALF OF THE PAPER, she says. As the exercise grows increasingly surreal, I find myself captivated by the two women, Elaine who is tied down by two-dimensional coordinates on a sheet of paper and Mom who grows more fanciful by the minute. The bottom of what? she wonders. The paper, Elaine reminds her. Oh, for God’s sake. Mom wakes from her poetic reverie and draws the required circle in the designated space.  That was it! says Elaine, satisfied at last. The unusual flourish of activity outside two-dimensional space—the work of the forbidden mind—is a thing to wonder at.

Through all of this, Mom doesn’t blow up. She had a terrific temper when my sister and I were kids. I think she was overwhelmed. It wasn’t easy as a young mother or wife, especially married to a musician who liked to carouse. And then the kids. My sister was a model child, but not me. I was a pain in the ass, always getting into mischief. Sarcastic too. Mom survived that. Her crazy father pulled her out of high school, as he did all the girls in the family. They were yanked from school and sent to factories. Even after a stroke, Mom’s memories are sharp. You know, she says, we had no nylon stockings back then, so my sister Mary, who was such a fashionista, made me draw seam lines up and down her legs with an eyebrow pencil. DuPont was making parachutes with Mary’s precious nylons, she adds. Even though poor, Mom says, they made ends meet, but when your grandpa, that wannabe mafioso, wound up in jail things didn’t go so well. But that’s a different story. Mom’s was a big family. They are all gone now. As I said, she’s a survivor.

Ironically, the problem for Mom is longevity. She has outlasted everyone in her social network, including a multitude of family members. Colleagues, friends, relatives, neighbors—they have all vanished like leaves. She lives on an island, to some extent marooned. Still, she remains engaged in life, consistently interested in the world. As Mom sees it, she’s still very much a viable human being. Until now, she has mastered the art of living alone. She has her books, her laptop, her Netflix, her Honda, a cozy home with squirrels and rabbits. Feeling competent is what really keeps her going. It’s like an existential green light. Take that away and a mountain of doubt rises up. My guess is that Mom is an unfamiliar place. For the first time in her life she’s not in control, and that’s got to be unnerving. She can’t drive, she can’t pay her bills, and communication for her is pretty spotty. She looks at her Honda with longing. My sister and I reassure Mom that, even from a distance, we’re on top of things. She has nothing to worry about. With a few mouse clicks, a call here and there, we can manage things invisibly. This is what we think—this is what we need to think.

But what is Mom thinking? Mom wants to take a taxi to the optometrist’s on Monday. She has an appointment for a spot vision test. Dr. Nick, she calls the eye guy, who is just down the road. I’m not crazy about a taxi in this case, some strange dude trying to puzzle out her directions. I try to talk her out of the idea. Mom, can’t you reschedule your appointment? Is this test really crucial? I’m being reasonable, I think, but Mom is not interested in my line of thought. She takes a deep, exacerbated breath and tells me she has no intention of rescheduling her appointment. No, it’s too stressful, she says. I rely on these people, like Dr. Nick, to take care of me. I’m all alone here. You have no idea what this is like. I live here, no one else. If I can’t do this, who else then?

There are tears in her voice. Mom is close to the edge. How could I not understand her angst? I’m sure Mom’s aphasia has only deepened her sense of isolation and anxiety. With language we connect to a world of others. We tell jokes. We build bridges. We interact. Whatever buffer once existed between old age and now is gone. She is ultimately going solo with this new thing, the stroke, and she misses her old spunky self, the Sicilian who survived one trial after another. Mom could always rely on that person. Now she’s not so sure she’ll be back. Instead, there’s me on the other end of the line certain he can help in this great time of need with a small dose of reasonableness.

We have no idea how alone our parents are. For Mom, the authorial “I” is no longer a reliable narrator. She understands how her sentences might get lost and how with them she might travel to unfamiliar places inside her head, as if the aphasic mind were exploring its own novelty. Regardless of all her output errors, I know something compelling is going on in Mom’s mind, almost as if she were tuned into something beyond my reach. I’m just afraid to listen. Maybe I see in Mom the old person I will become and simply refuse to recognize myself. Until upon us, wrote Simone de Beauvoir, old age is only something that affects other people. Or maybe I’m just startled by what lies beyond my ken. Perhaps this is why we turn off the voice of old age when we hear it. We don’t want to know.

It’s ten a.m. and I have a plane to catch. Mom is looking at a photo on her fridge. In it, a mime dressed as the Statue of Liberty wraps her in a flag. This was ten years ago in New York City with my sister and niece to celebrate her eightieth. Mom is looking at her younger self, who at that moment seems in a trance. I was memorized by that person, she says of the mime. Mesmerize, I say to myself in a knee-jerk kind of way. But I’m not sure that correction is right. Mom is looking at the photo as if she were experiencing it all over again, the sights, sounds, and smells of the city, the time of day, the silky texture of the flag. In the photo she is letting herself go, surrendering to the magic of the mime. The moment is there in the image, frozen like a snowflake in time, and now Mom watches it drift across her mind, an instant committed to memory, learned by heart, this other self that hasn’t really vanished without a trace but lingers in the distance like the echo of a faraway train.

Jeff Porter is the author of Planet Claire: Suite for Cello and Sad-Eyed Lovers, Lost Sound: The Forgotten Art of Radio Storytelling, Oppenheimer Is Watching Me, and co-editor of Understanding the Essay. His essays and articles have appeared in several magazines and literary reviews, including the Antioch Review, Northwest Review, Shenandoah, Missouri Review, Hotel Amerika, Wilson Quarterly, Contemporary Literature, and the Seneca Review. For more information, visit www.jeff-porter.com.