It’s that time.
My twin sister, Sandi, is staying the night so I let Amanda know its time. She has to start thinking about moving. Just a few days ago, one of us could help her move to the bathroom. Now its better if two of us are there.
First she doesn’t move, gently dozing off again. Eventually, she wakes and calculates her breath, preparing to swing her legs off the couch. After each big move, she, we, take a few minutes to just breathe.
Its time to move off the couch and to the chair. She grabs the handles and I grab her waist, worried that I’ll break a rib. I can feel them all. I wheel the chair to the bathroom, while Sandi make sure the oxygen tube doesn’t get caught on anything. I’ve now had some practice wheeling this chair, so I pass the maneuver ability test with flying colors.
When she gains the strength to walk to the toilet I spot her from the front, Sandi at the back. She reaches the toilet, one of us pulls down her pants, revealing the tattoos she thought my mom would never see.
We let her sit for awhile, somewhere between 10 to 20 minutes…time is easily lost.
She calls us back in. We stand, pull, flush.
That morning we had tried something new. Going from the toilet, to the stationary chair in her bathroom, then scooting across the linoleum back to the walker/chair. It’s now a little harder than it was that morning, but we do it.
A few more minutes here.
Sandi stands behind her, rubbing the bones of her shoulders. I take her hands and she asks me to count.
I count like its a god-damn prayer.
1, 2, 3, 4, 5, 6, 7, 8, 9, 10
10, 9, 8, 7, 6, 5, 4, 3, 2, 1
Over and over, until she has caught her breath and the panic subsides.
We wheel back to the “living” area, just short of the couch. Sandi is again at her back. I move towards one hand so my dad can take the other.
I begin to pray again.
1, 2, 3, 4, 5, 6, 7, 8, 9, 10
10, 9, 8, 7, 6, 5, 4, 3, 2, 1
Its an effort to focus, not to skip over 7. I look at my dad, rubbing my sister’s arm. His eyes are sad. Lost. He has already lost his dad as a teen, and later on his youngest brother to leukemia. He tells Amanda that she is doing amazing.
We wheel her back to the couch, again taking a few more minutes to breathe before the final move. My dad and I have traded sides, traded the skeletal hands we hold. Sandi is still at her back.
I imagine our deceased loved ones behind us, their hands on our shoulders, as we hold on to Amanda. Uncle Ronnie, still 29 and glowing, between Dad and Sandi. Aunt Barb, 57 when she passed from cancer, standing between me and Sandi. Our grandparents behind them, dogs from our younger years at our feet, except Sophie-Soph, who is of course on Amanda’s lap. These are the one’s that Amanda knows will be waiting for her.
I’m not sure if I actually feel their presence or not, but the image helps me anyway.
Amanda makes her move to the couch, light as a feather, collapsing onto the cushions.
We cheer, but Amanda still needs to get her oxygen level back up.
When she smiles and accuses Sandi of conspiring with my mom via text, I know I’ll be able to get some sleep tonight.
I say “Sweet Dreams” before I leave.
Amanda passed away peacefully a week later, sometime before 12:30am on September 3rd. The night she passed, I was sleeping feet away from her on the bottom “L” part of her couch, my mom perpendicular to me, and Sandi on the floor. Her medical bed beeped as it often did… we had never really figured it out. My mom got up first to turn it off and then said “Girls, you better come quick, I don’t think she’s breathing.” I jumped up, ran to her side to check for a pulse in her wrist, then feeling her chest for a heart beat. There was none. I collapsed to my knees next to her. I believe it was Sandi who made the first sound. That sound you hear someone make only when they realize the world they once knew is now shattered. We gathered around her bed and sobbed. I held Amanda’s hand for what felt like a second and forever (most likely around 45 minutes). When my dad came and I watched him start to cry, I held his hand with my free hand, reaching across Amanda’s body. My mom rubbed my back, re-assuring me and Sandi, and herself, that Amanda was no longer in pain, and that somehow, without her, we would “be okay.”
Denial & Survival
Some psychology experts say that denial is a coping mechanism. When facing death of a loved one, I have found that it actually more resembles a survival mechanism, placed somewhere in the in-betweens of fight, flight, and freeze.
If the tears didn’t stop, how would my family and I have found the energy to take care of my dying sister/daughter? It’s not that we believed she would live, as hard as we all hoped and prayed for a miracle, our minds just couldn’t go there. We had to keeping on living in a seemingly impossible situation: my parents watching the body of their eldest daughter fail her, my twin and I bearing witness to the fragility of our sister, just 4 years older, barely 36.
We flipped through photo albums of a lively, young child, holding on to memories rather than reality for just a while longer.
When I was younger, I thought sacred referred to something “holy”- something having to do with the Catholic God or Jesus, belonging to a set of rules or conditions.
Later, I believed the sacred could only be found in the natural world. High up on majestic mountaintops, deep in hidden valleys and canyons, spaces largely untouched by human hands. I still feel peace in those places, and maybe they are sacred. But it has been being with my older sister as she transitions from this world that I have truly found the sacred.
Sacred is not a thing, but a moment in time.
Moments that have literally brought me to my knees.
Kneeling before my sister and rubbing her legs as she tries to catch her breath after a trip to the bathroom.
Waking up at 3am and her asking me to take her hands. I crawl over to her on the couch, again on my knees as I grab both her hands and help her sit upright.
Watching my dad cry as he reads his birthday card from her, and she manages to conjure up enough strength and consciousness to help us sing “Happy Birthday”.
The nurse leaves, for the last time, and my mom, always so “midwestern tough” and steady, turns to me in tears and asks “what are we going to do [without her]?” as we embrace.
I don’t know what we are going to do.
At 4am, sitting around my sister’s bed with my twin and my mom. Watching my mom tell her first born that she fought really hard, that she is loved, and it’s okay to go.
The next night, being feet away from my sister as her soul passes. A family on its knees.
At the funeral home, watching my mom and dad, divorced for over 20 years and not speaking for most of that time, hug in front of the coffin with my mom uttering “Oh Bob, I never thought it would come to this.”
The tears mixed in with the laughter as we danced to “Can’t Stop the Feeling” at lunch after the ceremony, a song my sister had not long ago danced to after what we thought was her last chemo session.
But all that is over now. It’s not September 13th, 10 days after her passing. I’m flying back to Colorado and I ask myself “where is the sacred now?”
The only answer I can come up with is that maybe, maybe, it’s somewhere in the space making up the open wound in my heart.
“Life is beautiful…even when it’s not.” -Amanda Rose Nypaver