His Body

It was his 73rd birthday. He’d been taken into inpatient psychiatric care the night before, a phone call I had received while out at a bar with a group of friends. We were watching a Minneapolite musician, Dessa, play at Pizza Lucé in downtown Duluth. I liked Dessa’s music, but I really liked her writing. She’d detailed her experience rewiring her brain to forget a dangerous, almost obsessive love affair: the mechanics of love, told in poetry and electromagnetic imaging. Before the psychological intervention, she said, she had a kind of wild and inevitable connection to this man who could not be trusted with her heart. They were incendiary together, in good ways and not: a fire started with a glance, burning down the house with everyone inside. I’ve never had a love like that, but I could feel it anyway — her despair, her passion, and the terrible realization that whatever was happening in her was above or beneath her conscious mind, scratched into her whole brain. Every thought she had about anything traversed the rough path of that scratch — removing him from her heart was reductive: she needed to remove him from the apparatus of her Self, the thing that made her her.

I didn’t understand why this was so moving to me at the time, but now I do.

In the aftermath of my father’s death, I have tried to understand why I was so badly damaged by my relationship with him, the path of his dying, and his death. Obviously, the loss of a parent is a colossal thing: even as an adult, I inhabit the world my father built for me in so many ways. Some of the ways are destructive and poisonous, others are paradigmatic and foundational: this is how I love, this is who I love, this is what I mean by love. While I can describe each of these in voluble and granular detail, I find I cannot discern when what I am feeling is me, and when it is the familiar, rough terrain of one of the deep scratches left in my brain. What feels like instinct is not — instead it’s some wretched pattern of compensation, dressed like emotional regulation. Sometimes this is fine, and other times it’s disastrous: I either disappear from the moment, or I am frozen in it. I often feel as if I am standing stock still in the middle of some twelve-lane freeway while everything whips dangerously around me. In these moments, life becomes an impossible task.

I have devoured tomes of neurology information, watched hours of documentaries and videos, attended thousands of hours of therapy, trying to figure out what happened to my brain, and how to fix it. How do I rewire my own brain?

His birthday. That day, I resolved to bring him both cake and his birthday gifts. The first present, two pairs of sweatpants, purchased because the memory care unit staff had requested I provide him more pants, since his own were growing threadbare. How was that possible? I’d wondered at the time. I’d just bought him a stack of comfy trousers, and his own pants collection had been impressive when we moved him in, a little more than a year earlier. My father had always been such a dandy. He had a trove of impressive and well-tailored raiments when we’d moved him in. As a guy who could only traverse a 20-yard stretch of building, it seemed unlikely he’d been able to wear out the lot so quickly. Later I would learn that clothing in the memory care facility was tough to keep any kind of accounting for: my father would be in other folks’ pants, shirts, and sweaters (he was often wearing someone else’s reading glasses) most of the time, in spite of the labels on the inside of his garments. The staff was stretched to the point of apparent tensile failure: 15 residents to one staff person. That might make an acceptable teacher/student ratio, but all of the residents required advanced “cares,” the kind of help with activities of daily living that most able people take entirely for granted: help putting on clothing, toileting, washing, and eating. It seemed too much to ask that they also keep track of his wool henley, even though that sweater was the one he wore the first time he held his granddaughter. The thing about dying of Alzheimer’s is that 1,000 cuts doesn’t actually kill you. You can live through 10,000, maybe 100,000. It’s astonishing how much one person can suffer, actually, and not die.

I know the brain is a machine. I know we can trick it and fix it, and that Dr. David Eagleman, the brilliant leather-jacket neurologist, stands resolutely on a field of corpses from whose flesh he can find no material, scientific evidence any soul departed. He somewhat apologetically postulates that consciousness is entirely produced by the construct of the brain itself. The ever-changing accumulation of items from the earth gives rise to the body, the brain, and that gives rise to the self, consciousness, perhaps what we call the soul. Eagelman points to neurological damage and disease to support his hypothesis: damage the brain, and the Self — what Eagelman describes as the “unique, personal experience” of being you — is damaged. I think about the way Alzheimer’s kills the brain by making tiny holes throughout: At first, the clever brain just wires around the damage, circumventing the missing tissue. But eventually, the holes are too numerous, and the brain cannot wire around the ghastly lattice that is the remaining tissue. This is when symptoms are evident, and when people are typically diagnosed: when the brain is already extensively damaged. 10,000 cuts, and just getting started.

The second present was a warm blanket — he’d been suffering from insomnia his entire life, but now he was waking and complaining of being cold. The idea of him shivering, awake and alone in that place was unendurable: he was not my child, but he also was. I bought him a ridiculous blanket — a gigantic fluff of a thing. It was heavy and red plaid, and I rolled it into a kind of immense burrito shape before encapsulating it in metallic red paper, adorned with silver stars and green trees. My father’s birthday was December 1, so, like me (December 28), every birthday gift was possibly a Christmas gift, and vice versa. He’d always said he didn’t mind, but then again, so had I. Perhaps we both were lying. But now, I was certain he wouldn’t mind, because he wouldn’t remember.

When he first got sick, he did inexplicable things, like wash his dishes with his fingertips and cold water, forgoing dish soap or anything resembling a sanitary process. He left his tool box open in the middle of the living room floor, inches from his crawling grandchild, who could — and did — easily reach the open razor scraper sitting atop the pile of tools. He used an electric heater to prevent his gas line from freezing, and kept his bacon in the built-in egg-caddy in his refrigerator. He was never a steadfast or predictable man, but he was entirely competent: he rebuilt every house we lived in as children, by himself.

The third present was a small stuffed bear, big enough to embrace, and impossibly soft. This, I reasoned, would be great to have during his geriatric inpatient psychiatric stay at the facility in Mille Lacs, where he’d be for at least two weeks while the medical team there attempted to figure out how to stop him from attacking other people in the memory care unit. The last attack — the reason for the call during the Dessa show, and the subsequent in-patient psych unit stay at the hospital until the transfer to Mille Lacs could be coordinated — the last one was especially terrible. He’d almost killed someone: an 80+ year-old woman, confined to a wheelchair. He’d come up behind her, shoved her wheelchair face-forward into the wall, and then hoisted her back toward his chest by the collar of her sweatshirt, closing off her airway. She came as close to asphyxiation as a person can come.

No one knew why he’d done it — they weren’t fighting, and unlike the other people my father had attacked, had no historic beef betwixt them. I’d have to explain all of this to the geriatric psychiatric team, of course: as his daughter, I was an important reporter of his history before this disease: had he been violent? Was this out of character? The answers to those questions were confoundingly yes and yes — a complicated answer for a complicated man. I hoped I’d get the same intake person I’d had the previous two times my dad had been sent to the MIlle Lacs geriatric psychiatric unit. Reflecting on that, I realized that I’d only ever heard the aphorism “third time’s the charm” said ruefully.

The last gift was a slice of cheesecake, topped with cherry syrup and chocolate drizzle. My dad loved cheesecake, in really any form, as part of his near-legendary love for all things sweet. Before he was sick he’d come visit me and my sister, and he would decimate the confectionery of our houses, leaving just one or two of any cookie, a bite or so of ice cream, or the thinnest sliver of cake. He would consume entire vats of whipped cream, whole tubs of frosting, jars of maraschino cherries, and once, famously, two entire packages of Teddy Grahams cookies. He had laughed hard when I inquired as to the fate of the Teddy Grahams cookies in question. “They’re actually delicious. I’ll get you more.” He didn’t, but when I repurchased them, I tentatively consumed one, checking to see if they were, in fact, irresistibly delicious: they were not. This had made me smile from ear to ear — my father, bewitched by these weird little biscuits, hoovering them up while the rest of the household — including the small child for whom they had been originally purchased — lay sleeping, unawares.

On his birthday, I sat in my car in the parking lot of St. Luke’s, talking to Christine, the intake coordinator for Mille Lacs. She was not the same person I spoke with before, so she had to ask all of the important, but impertinent-feeling questions of me a third time.

Christine was terrifically compassionate, and incredibly knowledgeable. The next time my father almost killed someone, I told myself, I would hope to get Christine. She explained that my father’s history made it likely he’d need to move to a kind of higher level of psychopharmaceutical intervention, having Alzheimered his way beyond the reach of gentler solutions, like Celexa and fish oil. Now, because of how often he’d become violent, he’d need medications to control his behavior that came with what the pharmaceutical community refers to as “black box warnings,” warnings that include death in their list of possible outcomes. She said that, to my father, it would feel like he’d had three beers, all the time. We agreed that this was probably great for my dad, whose ideal state was “guy who’s just finished three beers.” She explained that he would be very different on the new medication. “If you can, spend time with him now, before he comes to us.” It sunk in over repetition: the father I had right now wasn’t coming back.

Sitting in my car, his pile of gifts on the seat next to me, I felt only the rush of blood to my head, the tingling report of my nerves. I moved the cheesecake from the dashboard to the seat, covering it with one of the gifts, to keep the chocolate from melting. I remember these things like little, vivid tableaus, like my mind wants to somehow drown out the scorch of anguish and grief behind the glistening sweat on the cheesecake’s narrow chocolate piping.

I made my way to his room in the hospital. He was dozing on the bed, in a blue and white hospital gown. He was no longer restrained — I understood he had been, earlier, when they first brought him in, before they had sedated him with medication — which was a relief. Although I had seen him restrained with the thin ecru woven straps the hospital used for such necessities many times, it was a kind of dagger-sharp agony to see, every time.

He was, as always, so manifestly happy to see me.

This is a memory I come back to, a moment that happened over and over, when I’d enter whatever room he was in. His face, gray and haggard with too much time indoors and the slack, confused expression with which the disease had replaced his clever, animated one. Suddenly, he’d see me, and when his eyes alighted on mine, he would break into an enormous smile, his eyes sparkling wildly with pure and evident joy. The look of complete delight on his face would transform the whole room around him.’

“Hey, Dad.” I said. As always, I was simultaneously so sad, and so relieved to see him.

“Hi, hon,” he said. He held out his hand, and I grasped it. I sat next to him on a chair, and dropped the gifts and cheesecake on the tray in front of him. He immediately reached for one of the gifts — the blanket burrito — which made me laugh. I had long abandoned any sort of traditional order to our visits — if he wanted to eat his pie before his chipped beef, fine. If he only wanted pie for dinner, so be it. He was dying. Let him sing along to Simon & Garfunkel while he colored pictures of trees and ate successive glazed donuts. Death is so radically exegetic: in a moment, standing in the shadow of it, all of the artifice and machinations we wrap protectively around ourselves to shield us from the inevitable unjustness of death just fall away. There we are, clinging to each other like two monkeys in the rain, realizing that none of our contrivances matter, none of them protect us. Eat the donut, hold my hand, stay with me. The end.

He began to turn the package over in his hands, a wry expression quirking his lips. My father had never, in the whole of my life, simply opened a goddamned present: he always made an elaborate, ridiculous game of it. Maybe he’d take a bite of the wrapping paper, tossing sardonic guesses as to the package’s content while he shook and smashed the gift: Is it a book? He’d ask, handling a precisely-wrapped bottle of whiskey. Is it a new car? We’d be giggling furiously, captivated and entertained, until at last, he’d painstakingly unwrap the gift.
As my father turned the gift over in his hands in that hospital room, he slowly hoisted the package in one hand, like it was a swollen Christmas football. He made noises like a quarterback, counting down to “hut.” I smiled. Dad held the gift up to one ear, like a hilariously cartoony phone, and muttered, “hullo?” Then he held the package in front of his face, and his eyes drifted away, the way they did when he was stuck somewhere inside of his mind.

Alzheimer’s is such a confounding and miserable disease. I thought about Eagleman’s damaged brain / damaged mind theory, and contrasted it with what I saw: one moment, my dad would be lost, the distance between him and himself expansive and hazy, like he had sunk deep into the murky water of his mind, and couldn’t get to the surface. I could always see it in his eyes: they were empty, as though he’d somehow disappeared, the man sitting before me like some copy of my actual father — a fantastic automaton. And then, he’d fight his way back, and was right there, behind his eyes. He could never hang on to that state — it was like an unstable connection between his soul and his body — but when he would surface, it was him. Not a part of him, but him, himself.

“Dad?” I leaned forward, touching his hand. He stared fixedly at the present, touching the shape of one piece of Scotch Tape, tracing a wrinkle in the small rectangle, over and over. “Dad, it’s your birthday. You can open it. It’s for you.” We sat in silence for a while, me waiting for him to come back, and him rubbing the wrinkle in the tape.

“Dad, I have to talk to you.” He looked at me, and he slowly came back, adopting his “serious talk” face. “Dad, do you know why you’re here?” I asked. “In the hospital?” He met my eyes.

“I broke people.” He replied, simply. He looked discomfited and meek. I hated it. I shook my head.

I was at a loss. As always, this confounding responsibility to explain to him what was happening. My typical impulse to soften everything like I normally did was utterly tantalizing, a cruel and simple pear on an unreachable branch. I did the rapid thought loop that I’d done a thousand times before. Tell him the same two-truths-and-a-lie that I’d recounted repeatedly: he had Alzheimer’s but it wasn’t that bad, tell him he was intrinsically worthwhile — a person with Alzheimer’s — tell him how big a difference he made in our lives … he could still receive these things and be moved or comforted by them. He believed me, when I said them. That the disease wouldn’t let any of these things endure in his mind, that he perseverated on just the most dismal and despairing of ruminations and concerns made every conversation fraught, iterative, relegated to this new quotidian gallows appeal for spare ounces of joy.

I involuntarily filled with exhaustion and despair in those moments, like those commercials in which a paper towel wicks up blue liquid. I imagine myself consumed by the advancing blue, sitting swollen and saturated, like a bleak and disconsolate Violet Beauregard.

I started out telling him what was going to happen next, what to expect when the world has ended, but you must still stay in it. It emerged as some calcified procedural litany: first the ambulance, then the doctor, this clinic, that clinic, the home, the medicine, his body, his body, his broken body. Was his mind broken? Was his soul broken? Was his mind part of his body? I tore my brain apart for any answer — not just to comfort myself, but so that I could understand what I was losing, what he was losing, what was happening. I wanted to tell him the truth, but I didn’t know what it was.

I was frozen in the 12-lane freeway. So, I told him what I knew: that he was going to take medicine that might kill him, but it would stop him from hurting other residents of the home. He had to take the medicine, I explained, because he had to have a place to live, because he had Alzheimer’s disease, and he was really, really sick. He was dying.

He listened intently while I spoke, and my confounded heart began to collapse inside of me, like some horrendous event horizon that would engulf me, then my father, then this fucking hospital, then the whole world. I started sobbing, ridiculous, wracking, gasping convulsions, like a caricature of lament. I was only grief, manifest.

Scientists of many feathers have long wondered whether or not emotional memories and trauma are stored in the body, in much the same way memories are stored in the brain: a repeated pattern of electrical activity, called into motion by the act of recollecting. Memories, modern neurology asserts, are less like closets full of old sweaters we go and pull out to examine. Remembering is more like reassembling a replica of the electrical signals we experienced when the event occurred. This is why our memory is so fallible: the bus was blue in the world, but in our memory, it is green. We are not perfect machines. So, this freeze-frame electrical pattern might extend into the body, in the fascia, particularly. This memory is particularly acute and complex for pain — physical or emotional. When we are hurt, pain scientists assert, our brains make no real distinction between physical pain and emotional pain. All of the pain of the moment is encoded in our memory, associated and stored together. We learn from pain: we learn to protect ourselves from the things that have caused us injury — physical or emotional. To do this, we experience a sense of danger when we think we’re again in the same situation in which we were previously injured. This is a very complicated thing, in the case of emotional injury, because, without explanation or warning, we can find ourselves feeling deeply unsafe or retraumatized by events or circumstances resembling our actual emotional trauma. Herein lies one way to carve those deep scratches into a mind: repeated experience of the feeling of the trauma can make more and more situations — everyday, safe, ordinary situations — feel desperately dangerous. If the feeling, for example, is an acute feeling of helplessness, even lesser moments of feeling helpless can activate the original trauma. The molehill resembles the mountain, so the molehill is the mountain. The brain, in order to keep us alive, responds to danger by preparing us to flee or fight, and by sending pain, so we do not again repeat whatever hurt us before. Sometimes, this experience is almost unbearable. Sometimes, it is unbearable.

My father reached out and shoved the small table aside and grabbed my arm. He pulled me to his chest, and wrapped his arms entirely around me, like I was a child. In that moment, I was. He crushed me to him, and for a moment, the smell of him, the feel of his arms around me stopped the spinning, creating an entirely safe, quiet, gentle space. He began talking, and although he spoke in word salad, a collection of made-up or random words, I knew exactly what he meant. He was telling me that life dealt people as much good as bad, that nothing was fair. He was telling me that he was sorry I was hurting, and that he was okay. He was okay with it all. He knew he was dying and it was shit, but he was going to do it anyway, and I didn’t need to worry.

Eventually, he released me. I stopped crying, and we opened the last of his gifts. He grew tired, and I covered him in his ridiculous plaid blanket, tucked his plush stuffed bear under his arm, kissed his forehead, and left.

I thought about Dessa, pulling her mind apart and putting it back together again, the pathological love reduced to a nostalgic recollection placed in its spot in the order of her life. The habituated scratches shallower than the healthier new neural networks. Eagleman talks a great deal about habituation and the way a brain is “livewired,” ever-changing in response to experience and stimuli, and I wondered, how was I meant to reconcile or even navigate the paradoxical network of scratches in my own brain: that this man was the safest place for me to go when I was terrified, and that this man was one of the main reasons I was terrified?

My father never stopped recognizing me. He never stopped trying to talk to me, and I never stopped understanding him: assembling his tone, his posture, his gesticulation. The times he disappeared lengthened, and the times he emerged more harrowing. I didn’t and still don’t understand it. The days leading up to his death, he was unable to open his eyes, but he recognized our voices, clutching and squeezing our hands just like he always had. The last time he told me he loved me was weeks before he died. I had read him a chapter of The Hitchhiker’s Guide to the Galaxy, and then talked at length to him and the caregiver who facilitated the conversation. I told him I loved him, and he said it back, like it was the simplest thing in the world. Like it was any day before this fucking thing happened.

I recently listened to a talk Eagleman did with Sadhguru, a renowned Indian yoga guru and spiritual leader. The conceit of the talk was the vast delta between Eagleman and Sadhguru regarding the nature of consciousness: Eagleman as the scientist straight man, all neurons and material, and Sadhguru as the mystic, handwaving at the numinous. I wanted them to talk directly about why brain damage alters consciousness, the self. But they didn’t — they somehow could never quite get to the same lexicon, instead gently circling any number of other wildly important questions about the human experience. But I was left in stasis, my mind oscillating back and forth between this knowledge of human neurology and my experiences with my father. I wondered if my hope was protectively coloring my perception: would I survive discovering that all we are is that changing assemblage of things harvested from the earth, which give rise to our consciousness, and then see it mutate and disappear with every lost synapse? This, to me, is unbearable: that what my father suffered was about nothing, for nothing, and at the end, he was simply gone.

It’s been a year and a half since he died, and it’s still impossible for me to wrap my head around it. The only thing that has changed is that he is dead. I believe that I will never stop missing him, and never stop trying to get over the mess that loving him so dearly made in my mind. My mind, my most precious refuge. My mind cannot be an impossible place for me to inhabit. I have to find some way to understand this, release it, and move forward, not just without the pain, but the memory of the pain convoluting the world around and inside of me. My own feelings cannot be dangerous to me.

Last week I was leaving a downtown business, and another woman matched my stride down the stairs to the street. She introduced herself, since we’d become de facto walking companions, and she began to share her story. She’d been in a freak accident and sustained a traumatic brain injury. For two years she couldn’t leave her bed. Her prognosis was utterly grim. I nodded soberly, contemplating the horror of such an experience, mourning the pain she endured with her as we walked. “I’m back now. I’m back,” she said. “But for two years it was like I was locked in my own brain. I couldn’t get out, and couldn’t make my brain do what I wanted it to.” While she described her experience, I pictured her Self in a jar inside her brain, trapped like a lightning bug. I thought of my father, of course, and of the day he died.

The moment I heard he was dead, I knew exactly where he was. He was sitting at the head of the LeConte Glacier, somewhere dangerous and devastatingly beautiful, eating a tube of Braunschweiger and drinking a beer. He knew with certainty, for the first time in his entire life, how profoundly and thoroughly he was loved. He could trust it, feel it, in the fabric of himself. Amidst the complex agony and relief of that day, nothing brought me more comfort than that image, and the absolute certainty that it was real. I felt him out there on that glacier. I feel him still. I think I always will.


Chester Knob

about 1 year ago

Incredible and devastating writing, Anna. Thank you so much. 

"The body knows the score..."


about 1 year ago

Powerful and courageous. 
LeConte Glacier; fitting. 
Thank you.


about 1 year ago

Thank you for this. One of the most loving tributes to a parent I have ever read.


about 1 year ago

So well written. Once I started reading I couldn't stop. Thanks for posting this. You are brave and strong. Thank you.

Warren Kelly

about 1 year ago

I can't begin to describe the convoluted chain of events that brought me to this article, but I'm thankful that I found it. My mom has had Alzheimer's for the last nine months or so - the holidays were painful, but there was no way I wasn't going to spend them with her. Most of the time, she knew who I was. She recognized my kids, which was a blessing.

I think the resonance in this article was the "death by 1,000 cuts" metaphor. My grandmother suffered from Alzheimer's too, and it always amazed me how long she was able to hang on. It's hard to think about a mind that has become so frail being protected by a body that is so resilient.


about 1 year ago

‪My heart lies in broken shards on the floor, a mix of the exhilaration, the pain, joy and sadness of love, and intense sorrow after reading your poignant words as they transformed, moving through me, closer than breathing itself.

With some trepidation of what could be the beginning of Swiss cheese holes, (hoping I’m wrong), I hope I will be as loved as your father was. And is. 

The whole pieces of him that peeked through the veil at his devoted daughter will stay with me. 

Thank you for sharing the love of you.

Chris Jenseniii

about 1 year ago

I have seen this first hand, except the afflicted person did not recognize their heirs. People think that this disease just makes old people say silly things or act funny. They have no idea of the devastation it wreaks on it's victims. I'm sorry you had to see it.

Chris Mitchell (he, him, his)

about 1 year ago

Anna, you have a fabulous voice in your writing. I am especially touched by this story of your Dad’s decent into the abyss of Alzheimer’s Disease. My Mom succumbed to the madness  in 9/10/11, and my best friend/surrogate father finally surrendered about a week before his 12/17 birthday and mine 12/18 last year. Thank you for putting this painful, mind-erasing curse into such incredible prose. You have a gift. Chris @cdmitchell

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