The Carousel of Anticipatory Grief
on death ocd and the neverending spiral
A former classmate of mine was dead. I dropped my laundry on the footplate of my wheelchair when I came across the post on Instagram— the second I read “Goodbye Porter and Thank You”, tears at a seeming impasse in previous weeks trailed down my cheeks. Porter and I only had a few conversations during our classes together, connecting about disability, chronic pain, and the premise of dying young. I couldn’t have imagined it would be such a sudden reality.
Death’s shadow has always flitted by me like a close friend. I nearly died every month of my first year of life, as my mother drove her four-pound newborn to every hospital in California to get opinions on why her baby was not moving her limbs. Or why her baby dehydrated herself, or why her baby made no noise. Turns out it was Cerebral Palsy.
At around six years old, the terror of possibly going to Hell set in. I pulled my plush pink flowered comforter over my eyes and looked at my warped legs. A woman with grey hair and deep-set brown eyes at church pulled my mom aside to pray for my healing weekly. Meanwhile, the small blonde girl with the metal walker skipped around and sang, unaware of her difference. It was only on the sermon benches that she felt imperfect, and anything less than perfect is damnation.
“If I die before I wake, I pray the lord my soul to take,” I said while staring at my white-stained canopy. If that didn’t feel right, I would blink four times more, then recite the prayer again in fours. While children were jumping off trees, running carefree through dew-ridden fields, and knew not of their weaknesses, mortality was already a friend of mine. I was convinced I would die in my sleep, or rather the ones I loved would die in theirs.
The scrupulosity from religion quickly developed into Obsessive Compulsive Disorder (OCD). Even post-religious childhood, now agnostic, the OCD is a slimy metamorphosis that clouds my vision and tosses reality into a tornado. Around and around and around the thoughts spin in the wind, until they are nearly unrecognizable from their original form.
It came in waves, but slams into the shore when things are good. A threat that they would only be temporary. In July of last year, my life shifted into the brown house in the alley. This was coming from a tumultuous time in New York City where I learned I also had my mother’s autoimmune disease, lupus. It was then I was torn from my past body, one that was weary but weary in a consistent way. The butterfly that ate away at my joints was rotten, decaying, new.
After having months of struggles in finding accessible housing, I moved into a charming house of hardwood and whimsy with three of my friends.
One night right after moving in, I sat on a chartreuse velvet chair from facebook marketplace and watched The Shape of Water with my roommate Willow. My other two roommates chattered on in the kitchen while baking pizza, Ella Fitzgerald was playing softly and two lit candles were on top of our dining room table that happened to have bronze animal feet at the bases.
I rolled into the bathroom and sat on the toilet disassociating. Why did this house fall into my lap? I felt uncomfortable with the premise of living a life I always wanted. Thoughts of car crashes, earthquakes, gunshots, and other catastrophes screamed into me. To feel goodness is to know it would end, and I truly believed that goodness would swallow me or those I held dear whole before I could fully grasp it in my fingers.
But I survived. My roommates survived. Over a year later, the world is still spinning and has not exploded into a fiery rapture.
The girl with doe-brown eyes and soft kisses was September. She said she loved me, and I loved her tenderly. It felt fleeting like the universe would call her back home at any moment.
A snippet for clarity:
My eyes flew open at 2 a.m. and my breath took on a rhythm of a familiar yet unfamiliar shape. Each breath drew a jagged line in the air, my nervous system ballooning and trembling.
“Marissa? Are you awake?”
Her curls moved off the pillow and sleepy eyes gazed my way.
“I love you, I’m scared of how much I love you.”
What if a stray bullet comes through the window right now? My mind feels weird, do you think I have Alzheimers? You’re too good to me, something has to end. Do you think I’ll die tomorrow? We’re too young to care this much, something tragic must happen, that’s how the stories always go. The story must go wrong.
Fours.
Fours.
FOURS.
NEVER FEEL CONTENT, IT WILL END. TO LEAN INTO THE PEACE IS ALLOWING IT TO SNATCH YOU AWAY FURTHER WHEN IT IS GONE.
She laughed, “OCD brain is OCD braining huh?”
I nodded, and she held me close, her curls falling into my mouth.
“It will be okay, I promise. Life happens my love, but I’ll be here for it. In this moment I love you, and we are okay.”
I used to be terrified showing her my rumination. It was baring my bones, the puppet inside controlled by some inexplicable power. She saw it and loved it anyway.
Instantly after reading and shedding tears about Porter, I called my best friend Madi. Madi is also 26 and born with a similar form of Muscular Dystrophy to Porter. The familiar surge of anxiety and panic fragmented my vision with blue particles of fear. Was this an omen? What does this mean? Am I next? Is she next? A metaphorical conspiracy board with the irrational red thread weaved in my mind. For life to confirm an OCD thought surely meant something?
“Hi my love,” I said. “Are you okay, are you alive?”
Madison’s sweetly-pitched voice answered with a quick “Hi my love! I’m in the car driving back from New York!” I couldn’t even get the next sentence out before being interrupted by globs of tears.
“Losing someone in the community never gets easier. I’m alive, I’m doing good, I’ll call you tomorrow,” she promised.
And she did.
I was lying in bed watching the sun pour through my broken blinds and latticed glass. My heart was light and calm, and the uncanniness of the feeling led to the neuron path traced a thousand times before. When my mind drifted toward the familiar azure tendrils of fear, I stopped and realized something so seemingly cliche. In my dread of death, I was losing the life my body endured hardship for, the life I stayed alive to live. To lose someone loved is a lucky thing, to feel the grief is proof of life lived.
Until the dusk sets in, I will love. The fear will return and I will cycle through this staircase of thoughts again, but so will the love.
Rest in peace Porter. I hope there is so much peace wherever you are. You were so loved by so many in this life, thank you for impacting mine.
Lil accompanying playlist: