Life’s like a movie, full of ups and downs and beginnings and endings.
Sometimes you gotta pick a spot at random, you know? Make a big gesture. So let’s build the scene. The camera moves on a track into a cave.
We hear the tinkling of small bells and the sound of wind.
I’m in the cave with a lady and a rabbit.
The lady and I, we’re on our hands and knees, our noses touching the rabbit and he’s goin’ absolutely ham cuz he loves attention. He makes little sounds. His name’s Mr. Pogo.
We sing to him.
Pogo did you know that we loooooove you?
Pogo did you know that we’re your onlyyyyyy friend?
We laugh like hell about that and Mr. Pogo gets worked up too.
Yes, it’s a good cave.
There’s plenty of light.
Stalactites.
Stalagmites.
We got running water. You can dip your feet in the stream if you want.
There’s a breeze.
We got everything down here.
Why’s life so lovely?
Cuz it’s fragile?
Handicam.
Mr. Pogo choked on something the other day and his eyes were popping and I totally freaked out and shook him like I’d seen on youtube and he leapt in the air and I guess it dislodged the food or whatever. He was fine.
Fuck.
Just talking about it makes my thumb go numb.
That’s one of my problems. Numb fingers, numb thumb.
Fish eye camera on the ceiling.
I’m in a hole. There’s rows of beds one after the other. There’s a sick person in every bed with an IV and a bag. What do I get? Monoclonal antibodies. It’s not quite chemo but my hair comes out in patches. Sometimes I play it up to get a reaction from people. Say anything about multiple sclerosis and folks glaze over. Mention chemo and they snap to attention, haha.
Anyways the withdrawal from the meds feels like being buried. The lady next to me is withered and can’t lift her hand. I watch with my peripheral vision. Her husband, or friend, I don’t know, whispers to her.
But that was before. Right now the sun’s hot and I’m on my bike with the wind on my face and I’m crankin’ my body side to side for speed and look out! Damn tourists with their phones in the air. We got shots of spokes spinning fast and shots of the river and here we let the score really build. Some strings, obviously. A french horn rising, rising, rising. My hands feel powerful so I grip the handlebars good.
I fly past the camera.
I’m buzzing.
Yeah I’m lapping other bikes and scooters and I’m at the soccer field where I pray I have 500 more games after this one. I’d take more but I don’t want to be greedy.
Rabbits have incredible peripheral vision, did you know that? Mr. Pogo likes to watch me. He goes on his backlegs and stares out the corner of his eye.
My little fish.
I gotta use my peripheral vision like Mr. Pogo. I’ve got a scotoma, you understand? It’s a black spot in the middle of my eyes. So I peek out the sides and people don’t know I’m looking. The defenders coming and I flick the ball up and I’m gone. The camera pans down the length of the field and there’s a farm in the distance and when the ball goes in the net the cheers are faint.
They grow strawberries at the farm but the season’s changing.
I’m dishing out Italian words with speed and confidence. Those are the keys in my opinion.
Cosa vuoi? We’re in the bakery. Cut!
Che cazzo, we’re on the soccer field. Cut!
Closeup of a mouth taking a bite and gesturing with a nakkin. Silence.
We’re in the cloister and nobody’s talking. We gather round the lemon trees.
Cut.
We’re watching Italy in the Euros. There’s a hole in the midfield, I shout. Spain goes through the hole and it’s all too easy.
But I don’t care much because I have these words and I’m holding on tight to ‘em.
I’m on the floor with Mr. Pogo. He sleeps against my leg.
It’s an opportunity for intimacy so I look at the camera. I give my most winning smile. Time for my monologue.
People tell me to keep writing.
Don’t give up! They say.
It's so annoying.
Hah!
(I cross my legs, careful not to wake Mr. Pogo.)
People like to put a pin in it, you know? Finished! Done. People wanna move on.
I’m never quite finished with anything and it’s etched on my face. All the things in progress.
(Mr. Pogo stretches.)
(The camera pulls in slow and I’m symmetrically framed but one of my eyes is uneven. My cheek is slack. There’s loose skin on my neck. My smile, the most winning smile, dips at one corner. I catch my reflection and don’t recognize myself.
The camera’s still zooming and my eyelid flutters. My mouth is soft and unspecific. My eyes dart and my hands crampin’. Numb thumb. )
Cut.
Sometimes I have visions. Everyday things get electrified. When I talk about it I sound stupid, I know. The first time I was a teenager and saw this water tower loom over me and I almost fell. It was high def and dimensional and it felt like I learned a new language in one millisecond. My Dad was there so I cried out “do you see it?” He didn’t understand. “Can’t you see it?” I felt sorry for him.
Here we could do a re-enactment to show how powerful this experience was.
Maybe it’s a brain damage thing. A crossed wire or fizzy connection. The beauty is loss. We see the back of my childhood re-enactor looking up at the water tower.
Cut.
I go on a trip.
Whirlwind airport coffee whine of engines and rubber on tarmac. You get it.
I’m in Charleston, South Carolina cuz it’s where I grew up. The camera’s situated over my shoulder and we’re going on a walk. There are charged locations here, like generators. My feet crunch on sand and gravel. There’s a lighthouse and I get a good charge from it. We pan up and see the tippy top with a backdrop of clouds.
People fishing and crabbing and the tide goes out. There are too many birds to count. In the evening people wade with flashlights and nets. The beams slide across the lens.
The sun’s a sliver.
I get this sick feeling.
This anxious feeling.
If you break your leg you look down and see the pins sticking out. You can watch it heal over time. Your noggin’s not like that. It’s too complicated. Your MRI’s an ocean and if you don’t know what you’re lookin’ for you’ll get lost.
Violins.
When the sun’s near the horizon line I get anxious as hell. I see a ball of shadow. I hear footsteps. I sense a giant animal.
I feel dread and this goes on until it's dark.
The high pitched violins subside.
Yeah, now it’s dark and I start to feel better.
Ok.
Yeah I feel a little better.
There’s a name for this - sundowning. It’s an Alzheimer's thing… or a brain damage thing.
I look at the camera.
Brain Damage thing.
I’m back in the cave.
I made this cave from nothing, you know.
Mr. Pogo watches me in the dark.
A guitar plays shimmering chords that give me skin prickles.
I zip through kodachrome slides of family and children and pets, yeah it’s all a bit loaded but it’s real. My gramma turns a hotdog on the grill, my Mom opens a present, my Dad laughs, and my brother’s on a trike. My lady in her wedding dress, my lady blushing, my lady with Mr. Pogo but she doesn’t know I’m watching. And the guitar pedal bends the music into a warm drone. We are thousands of light filled images on the walls of a cave. Mr. Pogo shakes his ears, yeah, he tosses his head and his ears go snap and he bucks and loses control of his small body and it makes us wanna dance too. The guitar’s found a loop of shimmering chords and we dance while the camera pulls away.
I’ve got three months of sweet spot. What am I going to do? I’m overexposed and there’s no clouds but I don’t care. I’ll relish the sun. I’ve got hours until dark and then I’ll rappel into the cave where we got everything we need. Books and quilts and chairs and plates and lamps.
Mr. Pogo closes his eyes and the camera blurs and this is how we know it’s time to sleep.
It’s black and we say one more time.
Pogo? Did you know that we’re your only friend?
I could see everything I was reading 🪞
Happy and hard, beautiful images all.
Lucinda (Noah MacMillan's mom)