Kylyssa Shay is a middle-aged autistic woman who works through her emotional pain in writing.
Care-Giving Can Be a Painful Honor
My sister-by-choice is dying of advanced, metastasized ovarian cancer. It may sound strange, but the poems I will be sharing here are my way of making sense of the world and honoring my own feelings to ease the pain of loss.
I've also been reading the words of other people processing their own losses, remembering and cherishing those they've lost or are losing. I have seen my own feelings written exactly by people I'll never meet, from all different circumstances, countries, genders, and ages. There's something deeply comforting in realizing my emotions are a common part of the human experience, that many people in the world truly do understand the pain I'm suffering. Somehow, it makes me feel a little more connected to the world, a little less alone.
I hope my words don't bring you pain, only a remembrance of the love you have expressed through providing care to someone at the end of their life.
Every Loss Is Different
Every time I care for a dying loved one, I discover that each loss is as unique as our love for each other.
My life has been something of a statistical anomaly in that I've been a caregiver of three beloved friends who have died or are dying much too young of cancer. The first was just 28, a non-smoker, and small cell lung cancer ripped her from us. The next was 38 when we lost her of the same damned thing. My sister turned 40 last March and there are but hours left.
My other lost loved ones fit a more usual and understandable pattern, being a parent or elderly. What may have been unusual is that I fell in love with the one dear, crotchety old bastard when he already knew he was dying.
Something in my nature makes me love those I nurture. I'm pretty sure I got it from my momma and learned it by being at her side as she cared for others, starting with Grandma Powells when I was just a toddler. I learned that caring for others was a sacrament and an honor that transcends belief.
I wrote the poem below because each bite my dear sister took from my hand felt holy to me and I felt blessed to be allowed to serve it. She worked in a pet store, giving care to small animals for most of her life and when the morphine came she joked that it was dosed with a hamster syringe.
She's still my little hamster girl for a short time yet.
The ghost of life grows and shrinks ahead of her
with sips of ginger ale and bites of watermelon.
Forty years are crystallizing behind her,
hardening into some final shape
I can only see in rough outline.
All the softness has slipped out of her life
like the sweet padding of fat from meals we shared
has melted from her aching bones.
Swelling, reproducing, spreading,
her cells split instead of dying.
Today there are no wet bites of melon,
no tiny, peeled sections of tangerine
passing cracked, pale lips.
A sip of ginger ale is a victory
and the shadow of a future in my exhausted vision
stretches out from her by a few days.
Her fingers pluck at something I can't see
like she's reaching for a small, delicate flower
and she says, "It's blue."
"I love you, too, sweetheart," I respond,
as the aura of time contracts around her,
hours tighter than it was just seconds before
and hardening swiftly.
I give her morphine in clear tiny drops
and she whispers a laugh when I say,
"Good job, my little hamster-girl,
you still have balls of steel,"
when she manages to swallow
and reaches in the direction of her cup.
She Understands Me
I'm an atheist and an autistic person and these two aspects of my life often leave me feeling disconnected from the people around me. I spend my life pretending to be someone I am not so they can feel comfortable. Even when they say, "be yourself," most people don't understand who I am enough to realize they can't feel at ease around the real me.
But my sister gets it. She gets me. She cherishes my weird ways with tenderness, loving them instead of being unsettled.
She radiates love like the sun
and everyone is drawn to its warmth.
As her sun sets, my skies grow so cold.
My eyes, burning, leak joy transformed.
Joy, like a baby, feels great going into you
and pretty damned awful coming out.
I'm so thankful to her that she's given me
so much I'll always have some left inside.
She finds time in her precious days to smile at me
and talk to me with love.
Have You Ever Taken Care of Someone You Love in Their Final Days?
Do You Take Comfort in Knowing Your Feelings Are Common to the Human Experience?
© 2016 Kylyssa Shay