Brain Damage, Amnesia and Me
My name is Michelle, she/her. I’m a writer. And amnesiac. In 2019, my gallbladder ruptured. The rupture caused a severe infection that cut off oxygen to my brain, leading to permanent brain damage.
Retrograde amnesia is a form of memory loss characterized by an inability to recall events that occurred before the onset of amnesia.
Anterograde amnesia is a type of memory loss that prevents the formation of new memories.
After surgery, living alone was impossible, but soon after, wonderful friends welcomed me into their homes.
During the first weeks after surgery, every morning brought the same paralyzing confusion. I had no idea where I was, even in houses I'd visited dozens of times. People quietly escorted me to the bathroom so I wouldn't disappear elsewhere in their home.
After losing my driver's license, which happened soon after the onset of my amnesia, I had to rely on others for meals. Formidable tasks, such as walking to a store, became futile, overwhelming battles.
As a writer, I found the diaries I'd kept since childhood. Reading entries—like discovering my three published romance novels—helped me piece together my life, even as it often felt like reading stories written by a stranger.
In the early months of recovery, I couldn't live on my own anymore. My driver's lisence was taken away.
Every morning, I woke up sad, scared, and confused, not knowing where I was. But as days passed, I started waking up to find sweet, handwritten notes that announced where I was. It wasn't uncommon for me to wake up many times a day.
The rare times I managed to sleep during those first months after surgery created a world in which the differences in my existence made me feel as if I were a book that had been instantly deleted. And now I was rewriting my stories in the absolute wrong order.
(Which is how my memoir about my existence as an amnesiac is being written.)
My friends patiently helped me navigate their homes, guiding me to the bathroom, kitchen, and backyard to prevent me from becoming lost.
After losing my driver's license soon after surgery, I relied on others for essentials like food. My weight dropped to 92 pounds, and I was deeply grateful for their help during this difficult time.
Through those diaries, I tried to assemble the pieces of my life, learning who I was page by page.
As I pieced together my history, I found stories about risky choices, profound loneliness, and honest thoughts about my mom, who died after brain surgery when I was 17.
Now, years after the surgery and the onset of amnesia, I'm still learning about myself every day.
My writings revealed moments of pain and loneliness, but also my vulnerability and love for my mom, who died after surgery to remove her brain tumor when I was 17. Her influence still guides me.
Some memories are slowly returning, but severe retrograde and antegrade amnesia still shape my daily life.
Here, I share my writing about what it's like to live with amnesia.
I'm glad you're here. Welcome to my world. Some days I remember, some days I forget, but I always keep writing.
And knitting.
And attempting to play my ukulele, which is a frequently unwon battle.
My Worlds Of Words
Like a lot of people, I wake up every morning. I'm sure this is true because I'm alive. Again. I'm in a living room, on a sofa. Staring at my hands.
Each morning, I wake and find myself still present. I am in a living room, lying on a sofa, observing my hands. They continue to function, holding a fork and bringing mashed potatoes to my mouth.
A cyclone churns within my mind, with memories and knowledge fragmented by the relentless force of unrealized possibilities.
My phone says it’s Saturday. I realize I’m at Jake and Gina’s place. I wonder if we slept together.
Maintaining a semblance of normalcy becomes increasingly difficult. They interact with me based on their understanding of my behavior, although I do not recall these interactions.
At this moment, my heart beats forcefully, reminiscent of trains on tracks. I cannot recall my address. I share my living space with two other people, one is my son. Each morning, I think of him. His age fluctuates in my memory, sometimes eight, sometimes eleven. I am approximately thirty-six years old.
Upon waking, the house felt unfamiliar and uncomfortable. Each morning, confusion persists. My mind is turbulent, resembling a hurricane that hurls debris against the structure of my skull. This debris consists of my fragmented memories.
I devote significant time to introspection. I realize that I have not left my residence in several days. Others encourage me to go outside, and I am inclined to comply. When they request that I engage in activities, it appears to provide them with reassurance.
External sounds, such as screeching tires, ambulance sirens, and barking dogs, evoke fear in me. These noises consistently cause distress, though the reason remains unclear.
I remember getting my clit pierced. I remember lying on a sterile cot, spreading my legs. The male piercer pushed the needle through my flesh. It hurt more than childbirth.
Words resemble crevices in mountains. I traverse the deteriorating, unclean fissures formed by the scrutiny of others. My heart resists contemplation, analysis, and recollection.
I cling to my words. My worlds of words. I get lost in the history of a lifetime.
ABOUT TIME
Things, like time, are war. Games. War games. Time—is of the essence. I grasp the heavy rifle in my hands. I blast the abyss with bullets of memories, leaving sparkling lights that, slow, dim into the darkness. Often I wish I was still younger. My terrain in my head, then, was a much smaller area to blow up.
Here is what is this about. I don't know what I'm about. Nor does anybody else.
Things, like time, are war. Games. War games. Time—is of the essence. I grasp the heavy rifle in my hands. I blast the abyss with bullets of memories, leaving sparkling lights that, slow, dim into the darkness. Often I wish I was still younger. My terrain in my head, then, was a much smaller area to blow up.
Time after time—we do not have the luxury of forgetting that time is of the essence. The second hand unwinds. The drum beats out of time.
Days and time whirl us up in its violent tornado. Lives living a billion schedules, pattering around the world in an infinitely interactive lacy web.
Somewhere. Some wheres. Somethings. Things. My bed. My paintings. My Le Creuset Enameled Cast Iron Dutch Oven. Blue Azure.
Now. I’m a writer. With published books. My published books are romance novels. Now I write my memories. My memories are rarely the same story accurately remembered. So. So I’m forcing myself to scrawl each version of the stories I remember. Then I just try to fit all the pieces together in a way that—fits. Or—doesn’t.
I love pretty stories. I love writing. Now I write. Now I’m in the middle of a tornado. Throwing the letters & words & exclamation points!!!
My brain is inside my skull. I know this is true because I’ve seen it. Seen images of this. In the X-ray I see see the tornado, violently rotating within a column of air. This whirlwind slices out pieces of what’s left in my mind. I see it scattered over the people I've known all my life or, seemingly, all my life.
A tornado is a violently rotating column of air. It is in contact with both the surface of the Earth and a cumulonimbus cloud. In rare cases, it connects with the base of a cumulus cloud. It is often referred to as a twister, whirlwind or cyclone.
I’m not sure why. I'm pretty sure I don't want to know why. Even if I knew why, I wouldn't remember anyway. Time. Flies. It's just a game I've never successfully searched through.
My memories. Carnival games. Loud. Tacky. Frustrating. Exhausting. But. What isn’t?
The Brain — is wider than the Sky
Every day, exponentially expanding, are my thoughts. I then forget them.
Every day, exponentially expanding, are my thoughts. I then forget them. I have a room and all I see are things I've collected over the past two years. Yarn and knitting needles and more colored pencils and more yarn and. . . and the rest is mine, my things. My things fit into a box. My small purse and my three backpacks. My two photos of myself and my son. My flute. My ancient tv, on which I watch Friends and Sex and the City. My old bathrobe.
My photos are in my old house, where my son still lives. We were sitting on the sofa, the sofa I chose with my husband. As far as I know, my ex husband, my son, and the new wife still sit on my furniture.
My things represent my life because they are my life. My life is in this room. My blackout curtains block out the back of a giant satellite dish. It overlooks the pool five stories below. And across the way there is another giant building with the exact same apartments housed within. Each has a minuscule balcony that nobody uses unless someone is smoking. Sometimes I smell cigarette smoke from the twenty-somethings who live next door. On Saturday nights they play rap. I have never met them.
What's familiar to me are my knitting needles and my yarn. I know people I see on my decrepit television. I know when the tv finally dies I won't have that. I try to focus on what I do have. Still, less and less do I have any wish to bother. But, I'm still a writer. I still have that.
I want to finish the hat I'm knitting for my son. I want to finish something. I wanted to finish my life, but I haven't and I won't. When I die I hope there's something good to do. Something to finish.
I have memories, and I want to talk about them and, more than anything, I want to see them. I want to go on a drive through Hope Valley. I want to buy a sandwich at the Genoa Store. Then, I want to drive to the Playa and get in a truck. I want to drive into the desert and find hot springs. I want to smile and drive that weird road that seemed to go nowhere. It had nothing particularly memorable about it, except that it was old. There was a town with a Smith's, a gas station, and an old church. I want to see those things. I want to see a sunset from my own porch. I want to make toast in my own kitchen with my own dishes. I want to drink water from a glass I remember finding at a thrift store. Instead, I'm just sitting in this room. The dark curtains hide an outside that means nothing. I'm looking at Facebook and seeing familiar faces. I'm confused because I have no reason to make new memories. I have no way to do so. I have no relevance and nothing I see is relevant to me. I'm a million miles away from anything familiar and I'm driftless in my sky.
The Brain — is wider than the Sky
Emily Dickinson, c. 1862
The Brain — is wider than the Sky —
For — put them side by side —
The one the other will contain
With ease — and You — beside —
The Brain is deeper than the sea —
For — hold them — Blue to Blue —
The one the other will absorb —
As Sponges — Buckets — do —
The Brain is just the weight of God —
For — Heft them — Pound for Pound —
And they will differ — if they do —
As Syllable from Sound —
