Last week I found myself re-reading old journal entries from the past few months, and decided to string some snippets together and write a comprehensive (ish) piece. Fair warning — It has nothing to do with disability! I warned you! Just my life and thoughts! This is for anyone else living with a terminal illness, or who loves someone living with a terminal illness – or simply for someone who wants to read a little bit about how cool I think my mom is – enjoy!
We must’ve been around six. Go play outside and get some fresh air, you two! Mom desperately urged Ryder & I.
Jackets were zipped; shoes were tied; and we were off! I followed closely behind Ryder, sneaking behind our neighbor’s house as we made our way to the pond (although, how much stealth can you really employ dressed in a bright yellow jacket?).
Our neighbor's pond was one of our favorite summertime spots. Plus, I think we enjoyed the little thrill we felt upon passing the No Trespassing! signs. Ryder and I came here often - capturing little wriggling creatures and murk-dwellers in mason jars to poke and prod and examine from the safety of our kitchen table.
Look! An eastern red-spotted newt. My favorite! He was bright reddish and orange in color. A well traveled creature, often found sitting clammy, beneath a stone or in damp clumps of leaves. A colorful reminder of last rainfall.
Wading in the pond weed, I captured him and we eventually made our way back home –mason jar in tow.
I made my new friend a home; a plastic tupperware with holes poked into the side, a few flat stones, and damn clumps of leaves.
Dinner time! Shouted Mom. We scurried to the smell of stir fry, leaving behind my orange friend in his tupperware sitting on our porch.
The next morning, I opened the screen door, ready to pay my new friend a visit. There he was – lying limp, orange underbelly exposed.
I watched, hoping for movement.
A twitch,
a blink,
anything.
Give me a sign, little guy. Don’t be dead. Please.
This was the first encounter with death that I can really remember (outside of the passing of a distant relative that Mom would carefully relay to Ryder and I, usually after a long hushed conversation on the phone with some other distant relative).
This one hurt. I remember the feeling: the guilt, the confusion, the anger.
Next thing I know, I’m lying on the stairs, crying into a pile of my own hair. How could he be gone just like that? He was wriggling around yesterday! What do you mean he’ll never shuffle away into the forest or glide back into the pondweed where he came from? Doesn’t he have a mommy and a daddy? What will they say?
My mom rubs my back and I listen to her through the matted pile that is my hair, now wet with tears. She explains it to me then & there: her voice soothing, unwavering. He is gone, yes. It is sad, yes! He will no longer exist in that little wriggly orange body anymore. He is transitioning out of this body; moving on somewhere. But Anni, this will happen to everybody. Everybody and everything. There’s no avoiding it! Everybody will die one day. His mommy and daddy will die; his other friends in the pond will die. The plants growing in that murky water will die. Everybody is born, and will eventually die one day.
After hearing these words, tucked up and crying on the stairs - it became a concept echoed again and again throughout our home. A topic of conversation. Sometimes offered tenderly after a pet's death, and sometimes posed as a matter-of-fact reminder as seasons change.
It even became a phrase Ryder and I would shriek in sing-songy voices to each other: 'Everybody dieeeeeesss!' I guess for Buddhist parents, reminders of impermanence are right up there with reminders to eat your veggies?
My mom continues —to this day —to remind me of impermanence. Annoyingly, after every breakup, every mistake, every time I called her from school to say I can't move on from something, someone:
Time moves, it always moves! All kinds of people love each other and then stop loving each other, and then struggle over getting over one another. All kinds of people fail, and then succeed, and then fail some more. Groups of friends fracture and reform. You’ll be close to all kinds of people in your life that then may disappear into the churn of acquaintances, but may pop up again in 3 years time. Despite the diagnoses and despite the odds, despite the failures and the breakups and the government and the headlines, spring will come again. The frozen ground turns warm and the flowers push their way up into the sunlight. Nothing can stop it; not avoidance; not anger; not fear; not sadness; every argument fails. People die and are born and get sick and get better and get sick again, and no one can do anything about it.
I come home in May, after months away from home. This is my first time seeing my mom since her diagnosis. She bought cancer hats. This is what I call them anyway. She has three of them. They are little knit hats, of various colors and patterns that fit snugly around her now balding head. I never would have guessed how cold my head gets now! She remarks. I laugh, hesitantly. I unpack my bags upstairs, and notice a mini fridge sitting beside her bedroom. For the days that I don’t have the energy to walk downstairs, she explains carefully. I crinkle up my nose walking into the kitchen – it smells synthetic, of fresh paint. Don’t touch!! My dad shouts from the other room. He seems to have taken up repainting the entire kitchen yellow.
It’s July. She visits me in California at a new job I’d accepted before we found out she was sick. We talk about her death. Sitting side by side in the sand. We talk about death at the steakhouse over dinner. We talk about death while we sip our $9 coffees in the morning (insane). We talk about her will and refinancing the house when she’s gone. We talk about her experience with love, with drugs, with heartbreak and with loss. We talk about things that are awful and big and scary, and also so many little things that are good. Little by little she shares – bits and pieces of a life - constructing someone I respect, someone I think I would be friends with if she wasn’t my mom.
I’m back in Massachusetts for school. It’s October and I call Ryder on the way home from visiting friends in New York. He is studying to be a doctor, and seems to have a better understanding of her illness. Stage 4. They told her she wouldn’t make it until next Christmas, Anni. Did you know that? Ryder what do we do? I ask. I don’t know anything about money. About refinancing the house, and taxes. Embarrassed, that this is one of my first thoughts. We’re so fucked, I say. We both laugh.
It is November. I come home for a few days for Thanksgiving. There is now a lawn chair, placed along our driveway by a neighbor, who must’ve noticed she got tired during one of her daily walks. On Friday I take her to Sloan-Kettering for her biweekly round of Chemo. Her treatment center is about an hour away. In the car she is upbeat–telling me about her nurses and the plethora of Uber-eats options in the area that we can order for lunch. She knows how much I love falafel, and raves about a nearby Mediterranean place.
I’ve graduated college now. I come home for Christmas. The kitchen has been painted a new shade of bright yellow. The pantry (which usually resembles a disaster zone of cereal boxes and cleaning supplies) has been completely reorganized. My dad is now working on building a meditation hut in the woods near our house.
My mom is the same but also different. She has spiky hair now (chemo changes hair texture when it grows back, who knew?) She still moves everyday. She’s slower, stiller. She goes to bed at 8, and is up before us all… but still has time to read in bed, or watch half of an episode of Suits with me. Her personality still exists in full force. She is kind and sharp. She does not dampen for palatability. She is loud. She is strong. She pisses me off sometimes. She dances. She drums her hands on the steering wheel when Paul Simon comes on. She sings. Not well, but a lot. Whenever I try to shush her, embarrassed, she brushes it off. Rinpoche says singing every day is good for you! She declares.
And now here we are. It is February and I have just recently moved across the country, far far away from my family home. Months have passed and her prognosis has gotten longer, shorter, and then longer again. In this past year, I have loved all kinds of people who I barely see anymore. My groups of friends have splintered and reformed. I went to the bars with my friends and then swore off on going to bars with my friends, and then decided to go to different bars with my friends. I have tried to get better at one thing or another, and mostly failed, and occasionally succeeded. I’ve gone to classes, decided to skip classes, and then studied like hell to make up for skipping those classes. For moments I’ve been sad and scared for my mom, and for even more moments I’ve been happy and fine, and then felt bad for feeling happy and fine.
Things have changed, I have changed, she has changed, and yet I am still that girl crying into a pile of her own hair on the steps.
I am still confused, still resistant, and still don't know ache and loss outside of the experience of having a mom to love me and to comfort me. To stroke my hair lovingly while I’m curled up on the stairs. I don’t know what will happen. With her prognosis, my life, tomorrow, any of it.
Everyone dies. My mom says. Everyone dies! How glorious! How liberating! How awful!
I do like to come back to her words, however annoying.
From her, I’m learning, I’ve learned. The weight she carries, the lessons, from room to room. From one curled up girl on the stairs to another.
Beautiful Anni 🫶🏻
Wow. Keep writing Annika… I’m loving this.