This post is part of our series in honor of ADA Awareness Month. While on a national level the focus is disability employment awareness, CKP is focusing on artists.
Going Places: Entry #2
By Randy Smit
About Going Places:
Welcome to an experiment in documentary writing. Randy Smit is director of Compassionate Connection, an organization offering pathways of practice to greater empathy and creativity for all people. This travelogue offers a multidimensional view of his own “ordinary person’s journey.” What follows are glimpses, glimmerings witnessed through the various lenses of its author; the Poet, the Person with Spinal Muscular Atrophy, the Pastor, the Artist/Collaborator… the one holding together and letting loose the many facets of self that contribute to “this splendid ride worth tending.”
As I write this, we have a friend with chemo pulsing through her veins. Someone had to drive her home from work. She thought another cup of coffee might be helpful, wondered about some residual effects of mononucleosis from her teen years. But the truth of it is simple. It’s cancer and we will all be in this together, witnessing the cruel work of one poison in pursuit of another.
Within moments I will be eating breakfast at the table and we will be talking about things unrelated to nausea and the gut punch of fatigue she must have felt just before asking someone if she could sit down. I will choose poached eggs maybe or ask Jill to make a smoothie. We will be on our way somewhere, more than likely forgetting much of the deep conversation we had this morning.
— — —
Now it’s later. But somehow still now. Let’s go someplace…
“Tell me what it’s like to lose…”
your socks, your appetite, your mind scaring off woodpeckers who find your house delicious,
a sense of normal, the death urge,
that one voice of yours, the scene you dreamt of, the spark
“… a wonderful caregiver?”
It is the end of the world. It’s autumn. It hardly seems logical. It is what every one of us could talk about.
[He should consider carefully whether to bring it up at all.
If he does, I think it’s only fair that he spends the time letting us into it,
otherwise what is he even doing? What’s it for?]
I may not choose to say much more. I may point you to another moment in the story. I may wait for a way through to be revealed.
I may throw a brand-new star into the sky.
Shoot up a flare
from your writing
desk, out into
your next nearest dark
there, you might
apprehend what brilliant
surprises may be hurled
out into the deep
you call the present,
to widen your eyes, to show
you the flight
of your own soul.
— — —
It starts with radiant light. That’s the best way I know how to begin. I’m swimming in too much light, and it’s wonderful.
What’s left of it is best described as whatever followed the interruption. What’s here right now.
You have no idea how difficult it will be for me to move away from this page where I am now writing openly and clearly and honestly. I’m terrified I’ll never return and that like so many snowflakes of poetry, patches of journal entries, pieces of this and that everywhere in this nowhere we call a hard drive or a Cloud on the Web… I’m terrified that so much of what I called meaningful will end up mere scraps of letters and phrases and sentences, all of which were just some strange exhaust of someone’s life that got lived some time ago.
Julian of Norwich was given entry in the 14th century. Afterword, she knew something new,
“Before [God] made us, he loved us; and when we were made, we loved him. And this is our substantial goodness, the substantial goodness in us of the Holy Spirit. It is nothing we create; it is our substance. God revealed to me that there… will be nothing at all between God and the soul. And in this endless love, the human soul is kept whole as all the matter of creation is kept whole…”
Cobalt blue go the skies around the house and white, gusty white and swirling. The sun is a flare of love. Not one cloud. I read, check the Bears, I glance at a journal entry I must’ve started a day with just after the first of the year. A voice intones:
“Do not proceed without Me, a sense of yourself…
I Am Spirit, Breath, Wind for flight and flow.
Now, do what you cannot. Speak what you are unable to. See.”
Now I imagine myself scribbling it down with a very tired, resilient hand.
Entries — Whatever you do, dear soul, do it for sure and find help and support when you feel you cannot. Attend to the entries. Whatever you want to search for and find and include, you can. Whatever you want to fix or edit or bless or magnify, you can. This morning you said to yourself “I have received simple instruction.” A structure came, “Read, Write, Pray [breathe], Play and Engage”… you said it yourself. Now trust it and trust your full bladder and empty stomach and waiting life. Your wife is waiting for you for breakfast.
— — —
The den is a dark snug place tonight. Days grow shorter. The light falls softly down around me. I sip Scotch, let leaves wave along while I listen to the Beatles on my headphones, my favorites. When I was sixteen I hated this one, but it’s grown on me. Over and again Lennon sings, “Jai Guru Deva, om (trans. I give thanks to [heavenly teacher.)… Nothing’s gonna change my world.”
“So, How many caregivers have you had over the years…?” I tell newbies, You only get five non-essential questions — so use them wisely.
I know a world remade with every breath; given, taken. I’ll go out to the bike path and witness what turns bright away golden. I’ll be a red leaf… I’ll go too — “gently, bravely, genuinely…”
I cannot share an unfamiliar blessing.
Later that evening in their home of 10 years or so, their marriage of 20+, they close the blinds and turn on some lights in the den. She swings the snack tray in front of the couch and he pulls up. The remote is under the couch cushion, the news is on the DVR, their plates are full of White Fish, potato, peas and carrots. He knows it is strange to do this.
One bite for her, one bite for him. And he chews as he does for a very long time, each bite. Tonight, it’s breaking news, again. A semi reaching over 100° inside, filled with refugees, is opened at last.
They shake their heads, fast-forwarding commercials.
It is what I have to manage.