CW: Strong language
I forgot the word lightbulb today. I was trying to tell Michael how the laundry room went dark. I think we need a new… do we have any of those...those things that make…
It was like a dark spot in my brain. The word had been redacted from my vocabulary. I tried to listen for it, to hear the word in my voice. All I got was static, like the old televisions used to have.
Would you change that thing in the ceiling?
We used to play this game with the kids when they were young—Taboo—where every card had a forbidden word you had to help your teammates guess, without using that word or any of the obvious associations. For example, carrot: you can’t say vegetable or rabbit or orange. I was always pretty good at this game.
“You want me to change the lightbulb?” Michael asked. I didn’t like the way he looked at me, like I was a stranger as unfamiliar as that word felt in my ears. Lightbulb.
“Yes, that’s it. Thank you.”
“Trish, are you okay?” He put down his phone and kept looking at me.
“I’m fine. It’s a brain fart. I might need another cup of…” I pictured it—the hot, black liquid, bitterness playfully nipping my tongue. I rescued the word from the swirling abyss: “coffee.”
He got up and went to the coffee pot, pouring the rest of our carafe into my favorite flowered mug on the counter near the sink. He brought it to the table, three-quarters full.
“I could have…” I protested as I picked up the mug and moved to the refrigerator to top it off with milk.
Michael sat down and didn’t pick up his phone. He kept on watching me as I put the plastic cap back on the milk and returned it to the fridge.
“What? I’m fine. Just find us a new...lightbulb.” I tested the word out. It felt familiar, but heavy in my mouth, like speaking a rusty second language—like visiting France twelve years after French class.
“This has been happening more lately,” he said slowly, looking at his hands folded on the table. I remember the way he wouldn't look at me, that shyness. I remember it made me mad.
“What do you mean?”
“Polka dot. Pump. Mango.” He rattled off a litany of words that caused my head to tingle. I didn’t realize he’d been keeping a list. I didn’t remember how long the list was.
I let my cup clunk down on the table. “That’s menopause for you. You try dealing with it.”
“I don’t see this happening to anyone else,” he said.
“You don’t see anyone else before their two or three cups.” The sinking feeling in my stomach kept me from putting my cup to my lips. I kept my hands around it, grasping the warmth.
“I think you should bring it up to your doctor,” he said. He looked up from his hands and his eyes were serious. This was not his usual ribbing.
I promised him sure, next check up. Maybe there’s a hormone replacement therapy that can help. It’s annoying, occasionally awkward. It would be nice to feel sharper, but I can talk around it when it happens. I was always good at Taboo.
Now I look at the lamp on my desk. I stare under the shade into its brightness. My eyes take in the glow, the shadow of my pen it casts across the desk. It’s all familiar—I’ve seen it a hundred times.
Lightbulb, I say out loud, but the word leaves me feeling dark. I’ll call the doctor tomorrow.
I am losing some words and gaining others. Temporal lobe. Tau cells. Aphasia. The last few months have been a whirlwind of evaluations and tests and scans. MRI, PET. Cold metal tubes in white rooms. (Incidentally how I’m feeling: cold metal and white).
It all adds up to a big lightbulb moment for my care team: my brain is dying. Shrinking, anyway, starting with the frontal and temporal lobes. Primary Progressive Aphasia. A mouthful for someone who is losing words.
There are other words that float around in my mind alongside my diagnosis. Like fuck. Fuck fuck fuck fuck. Fuck-shit-piss-hot-damn! I wish I had better words.
This losing my words is only going to get worse. I don’t know when. I might have a decade before my ability to communicate breaks down completely, before I can’t match names to faces.
“We’ll keep an eye on it,” my primary care doc told me, far too casually, when he delivered the news.
“That’s it?” I asked. His office walls were full of posters—the skeletal system, the eardrum, the digestive tract. The brain. I had always assumed my body would break down before my mind. I grabbed onto the thin paper covering the table beneath my legs and listened to it crinkle under my fingertips—more static, like the feeling that popped in my head when I tried to fill in the blank spaces. Please pass me the…
“We need to gauge your trajectory,” he said.
Trajectory. A funny word, like I was some kind of ball thrown in the air. No, I was free falling and I clung to that fucking tissue paper.
I couldn’t look at Michael. I could feel him next to me, but I didn’t want to see his reaction. Because then I might land.
“There’s speech and language therapy, ways we can retrain your brain to cope in the short term,” the doctor said. “But there’s no cure.”
So much for hormone therapy. Fuck.
“Don’t you have any of those research things?” I floundered. “Experimental stuff?”
I heard Michael’s voice. “Yes, a clinical trial, maybe?”
I don’t know if I’ve ever loved him more than at that moment, picking up on my Taboo talk, interpreting it into medical parlance. I loved him and I hated him. I envied him and I pitied him. I reached blindly for his hand and felt the roughness of it envelop mine. We both kept our eyes on the doctor.
“I’ll see if I can qualify you for anything, but it would only delay the progression of symptoms.”
I will take a delay. I will give all I have for an extra hundred lumens to stave off the darkness ahead.
I try to imagine my life without words. Will I maintain ideas, locked inside of me, shared with an aggravated wave of my hand, a foot stomp, a sad smile? Or will life be reduced to sensations? The difference between music and noise.
How long can I continue to process my days through writing? How long can I make a living with words? What will be my last word?
Fuck! I’ve always hated that word. It turns something beautiful into something ugly. Suddenly it seems the only appropriate word. Fuck! (Let that not be the last word in my journal).
Words I want to remember:
(Maybe it will help if I write them down?)
Harmony. A combination of simultaneous sounds. Plus I like the vowels. If I can hear it all together, hear the words through the static…structure, progression, tranquility. This word has so much going on inside of it.
Voracious. It sounds fierce, active. That’s my approach. I have been consuming words ever since I found out. Like they’re going out of style (they are). Medical articles, literature. Maybe by filling up on them… I mean, you always want to start a drive on a full tank.
Tulips. Michael brings me tulips in spring. Purple, orange, bright. “As long as it brings our two lips together…” he says. I want to remember the good things—how fun words can be, how we play. Let the abyss have those other words: snoring, jealous, fight. Leave me tulips.
Joan Didion used to skip over the words that slowed her ideas down. She described it in one of her books: she could outline a sentence and leave some blanks that she’d come back and fill in once the tidal wave of inspiration ebbed. I could learn from that—just keep going.
Only, that ability faded for her with age. She eventually had to start writing like a mortal. Was it the breakdown of the body or the mind? Where do you draw the line between them? Where do I? Does it matter? Life has other ________.
Anyway, A Year of Magical Thinking may be the last book I read. It’s hard, with the blank spots. It’s hard to concentrate. Or maybe I will try something more...happy.
Words to Remember:
Taboo. The things we don’t talk about, the words we choke on. Sometimes I feel myself spit them out. Word vomit. I’m not myself then. I don’t say those kinds of things. They warned me about this. The frontal lobe is responsible for _______. (Impulses? Inhibitions!) Mine are all unraveling.
Can I talk about me, apart from my body? Am I any more than the ___ of my parts? Is that an expression?
But also, the game. I was always good at Taboo. Talking around those words. Adapting.
Poetry burns away unnecessary words. It refines ideas to their ____. Essence? Not quite what I’m looking for but it will do. Silver and gold… What’s that called, that process? Or wheat and _____ (the byproduct, the necessary versus the excess…)
How long can I hold on to poetry? Longer? Here’s one for today.
Bread that crackles in my teeth:
Not the gummy bread, floppy,
Limp like old lettuce—
Bread with body. Charred, scarred.
I feel it crumble.
It’s called _____.
(My voice halts):
“Those things that
Sing in trees.”
Michael says it,
His voice weaving
In a dead language.
Words to Remember:
Bathroom. I speak it every day, to hear over the static. Remember bathroom. Remember bathroom. Because once I forget…
There’s light, but I forgot the other. The bad one. Maybe a mercy, but we fear what we can’t see.
This is hard.
Sometimes I just scream, when the words disappear.
Why? When it hurts?
The way berries last longer
Him. Them. Me.