Dispatch From Bewilderness

Judith Hannah Weiss

Probes puncture my scalp, surveying my mind. Temporal lobe, occipital lobe, you name it; there’s a probe for the lobe. The part of the brain that allows you to speak is the size of a penny. Other spots allow you to recognize your child, your mom, your home. Or not. Tests can’t measure what was lost. Just what remains.

Twelve years ago, a drunk driver stole a truck, jumped a curb, and mangled a parked car, where I’d been alone in the passenger seat. The good news was I survived. The bad news was brain damage.

Some things happen over years. Others occur in seconds—and replace who you were with someone you never met. She is strapped on a gurney with my name on her wrist, watching an angel wearing scrubs who is floating overhead.

The frontal lobes are among the most complex and recently evolved parts of the brain—they have vastly enlarged over the past two million years, which is like two seconds in evolution, about as long as it took to dismantle mine.

My eyes don’t see eye-to-eye. They don’t see the same thing at the same time, just as my ears don’t hear the same thing at the same time because the brain between was rearranged. It weighed three pounds and had millions of cells and wires that let me spin salad greens, spice a mean sauce, take care of my mother, keep clients happy, and clean dryer lint. Not anymore.

On Tuesdays, I volunteer in Brain Injury Group. There are thirty people present and thirty people missing. The thirty missing are who we were before—custodians, short order cooks, two attorneys, a pianist,  an FBI agent, and a grad student from Ghana. There’s even a physician who took care of people like us before becoming one of us.

Shit happens. One guy was hit by a bus. One was taken down in Fallujah. Another was taken down while taking down his Christmas lights. I survived icons dressed to kill at titles like Vogue, even a Devil-Wears-Prada or two. Then I was hit by a woman with no insurance on a breakfast run for beer.

In my first life, I made headlines for print and broadcast media. Prolifically not myself, I wrote countless pieces of promotion for clients like The New Yorker, Vanity Fair, PBS, and New York. Now testers ask if I know why I’m here. I point to my head.

More a story seller than a storyteller, I was a tool like a broom or a mop. I wrote about places I didn’t go, and things I didn’t do, for legends I didn’t know, telescoping huge amounts of information into tiny numbers of words. My clients got the credit and I got the cash.

My job was to learn something for the first time and write about it a few moments later. That gets reversed when you’re brain injured. You knew something a minute ago, but you don’t know it now.

My first self could make a shopping list, get to the store, get back home, follow a recipe and remember to turn off the stove. My new self incinerates what should have been dinner in what used to be pots.

Anterograde amnesia means you can’t remember things that occur after brain damage, like how to get to the bathroom and back. Retrograde amnesia means you can’t remember things you used to know. I lost books, music, science, art, and sensation in fingertips—the universe of neuron and synapse that made me who I was.

I also have aphasia. That means I can’t understand what people or signs or shows are saying and can’t find the words I need. Consonants fight consonants, vowels fight vowels, tongue fights teeth. Testers quantify my cognition and calculate my consciousness and assess my potential to contribute something of value—ever—to anything.

I don’t remember time or space or sequence. Past, present, and future meld together, like one jumbled moment. Let’s see, there’s breakfast, shower, kindergarten, college, dinner, childbirth, death of mom, floss and brush. It’s 2 p.m. and I’m in Brain Training. No, I’m in the bedroom, nursing my child 33 years ago. No, I’m at Time Warner twelve years back. Next, I’m rolling Play-Doh and pounding pegs in boards.

When the brain breaks, the legs don’t know what to do. Neither do the hands or the feet. In rehab, I learned to walk again in a narrow padded hall which felt like a bright blue tube. I was leashed to a physical therapist who walked behind me to keep me upright. I learned where to place my hands on the keyboard, how to make upper case letters, how to get up and down a curb, and how not to fall out of my chair.

I stared at screens for years, watching battalions of gray-black words file across, like unending trails of ants. I tried reading some of the magazines and newspapers I used to work for, and found endless ants again; letters moving forward, backward, up and down. The New York Times became “eht wen kroy mites.”

The day of the accident, I acquired a pre-existing condition. In the first few weeks, it cost $46,817.50. As the total multiplied into six figures, I recalled only the 50 cents. Steven, my financial advisor, explained it over and over to me: “If you can’t work, you can’t pay the bills. We’ll have to sell your home to pay your daughter’s tuition and your medical bills.” But it all went over my head, which seemed to house a vacuum now.

Before the accident, I’d started a job ghosting a book for a famous doctor. The client was told I had hurt my back, and was willing to wait. After three months, not so much. Steven refunded the five-figure advance and I never received another paycheck, never got another job. Then Steven sold our home.

My daughter Hannah and I lived in a cozy farmhouse, built in 1824, which we loved and hoped to keep forever. On our last night, Hannah and I slept on the floor of her room, now stripped of its furnishings. I remember gazing at the wallpaper, the moldings and the doors. I stared out at the towering evergreens rooted for centuries and the young trees we’d planted. They stayed where they belonged. I was shipped nine hours south to a sleepy river town which had known better times. No trace of the move remains in my mind.

I began scrawling anything I could recall on any surface I could find. The goal was to write things before I forgot them. I wrote on paper plates, napkins, receipts, coffee stirrers and Popsicle sticks. Fragments not in alphabetical order, or numerical order, or chronological order, but out of order like me. I stashed them in brown paper shopping bags, then forgot the shopping bags.

One scrap read: How to remember what you forgot.

I have “articulatory groping and phonetic disintegration,” which means repeated efforts to find the right word. I also have anomia, which means trouble knowing names of things. They ask me to point to a teapot, an apple, a plate, a spoon. This is called “confrontational naming.”

The tester, who seems bored, asks me to repeat the phrase “Cadillac and book,” I say, “cat back and zipper.” But when she asks me to say, “7, 4, 9” backwards, I jump right in with “9, 4, 7.” This could be helpful the next time I need to speak in reverse.

Cognitive scores, computed in quiet antiseptic cubes, determine the treatment we will or won’t get in real life—and if insurance will pay for it. But real life isn’t static or scrubbed of distraction like the cubicles in which we are parked. It’s erratic, noisy, chaotic, and doesn’t come with step-by-step prompts.

My scores spanned from a low of 22 to a high of 99. My doctor said that I was both too screwed-up and not screwed-up enough. If I were more screwed up, they could do something. If I were less screwed-up, they could do something. But I wasn’t, so they couldn’t.

There are two Brain Training programs—one for survivors and one for caregivers. I was the only person in both. Sometimes they’d pluck me out of survivors and plunk me in with caregivers for a few moments so I could learn to take care of myself. Still, I text the wrong message to the wrong person, and land on the wrong road, in the wrong state, on the wrong week.

The new me had never read the books I loved, never shared favorite times with Hannah. I couldn’t remember the sound of her voice or the scent of her hair. Brain damage means great chunks of yourself crashed like cliffs into the sea. You’re alone—not just by yourself, but without yourself. A cancer survivor says, “You must believe you are a person worth keeping alive.” A brain damage survivor says, “You must believe you are a person.”

Every few moments, I try to gather some of the most moving, quirky, bewildering things bouncing around in my brain before they disappear: Humans are 60 percent water. The sky is purple at sunset. Once upon a time, my child’s hand was warm and certain in mine as we crunched across decades of shells. They were often purple, too.

I build homes for birds with salvaged wood. Birds make nests in them for babies. They build them with twigs, string, moss, and magic, molding them to the shape of their breasts, pressing them to their warmth and their heart.

I lost a piece of my mind and sometimes it shows on my face. I pray that it won’t, but I know that it does. My daughter says her mom disappeared. TBI took me from my daughter, my daughter from me, and me from myself.

Every 21 seconds, traumatic brain injury breaks another American brain.