This knowing we call love…
Shawn McDaniel is considered by the world to be hopelessly disconnected because he can’t control any of his muscles — trapped in his wheelchair or bed, dreaming. No one knows Shawn is aware — they think he’s ‘stuck in neutral.’
But Shawn remembers everything he ever experiences and his spirit escapes his body when he’s having seizures so that he can soar free.
He has his own views of the world.
This is what he sees and if he could speak, this is what he’d say to us…
On my life and the particulars of my situation.
“My name is Shawn McDaniel. My life is like one of those “good news-bad news” jokes. Like, “I’ve got some good news and some bad news — which do you wanna hear first?
“In the jokes, it’s always the good news first, so here goes: I’ve spent my entire time on planet Earth, all fourteen (almost fifteen!) years I’ve been alive, in Seattle. Seattle is actually a hundred times cooler than you could believe unless you lived here too. Some people gripe and moan about the rain and the weather, but I love Seattle. I even like the rain… I love my life.”
“Our house is about a mile from the Seattle Center… AND, we’re only about a mile and a half from Bell Town, the unofficial former Grunge Capital of the universe.”
“You’d be surprised how much stuff you can learn and remember when you haven’t got anything else to do with your time.”
“Experiencing” life the way I have, that is, only through what I see and hear, has made it hard for me to really understand some things. I’ve seen people run, but I have no idea what your legs feel like when you do that. What does your arm feel like throwing a baseball? Your fingers holding a pencil? What do your lips feel when you kiss somebody?”
“If you saw me having a seizure, you’d swear I was in pain.”
“… did I mention that I love my seizures? They’re doorways to someplace at least as real and far better than “reality”? Did I mention that I LOVE my seizures?”
“ …it’s like my eyes have little minds of their own — I can’t will them to pay attention. One second I’ll be looking at something and the next moment my eyes muscles will decide that the smudge spot on the wall is where I should be looking and that’ll be that.”
“When my spirit is out of my body… I have complete control of my motions: I do all the things I see and imagine other people do: I soar, sail, walk, run, skip, sit, lie down, roll over, wiggle like a snake, swim like a fish, leap tall buildings in a single bound, slither through cracks in sidewalks and walls, zip over the clouds…”
“It was a nice day, sunny and warm… I remember the breeze was kind of tickling my nose and ears.”
“Wouldn’t you rather be happy for no reason than unhappy for a good reason?”
“I think of the way on cool mornings in November, the sun pours in through the window and covers my hands.”
“I remember sitting at the edge of the ocean, digging my toes in the sand, watching whales blow spray, and then dive down into the black water.”
“I do remember everything; nothing that ever comes into my head ever gets out again.”
“I do sometimes wonder what life would be like if people, even one person, knew that I was smart, that there’s an actual person hidden inside my useless body; I am in here, I’m just sort of stuck in neutral. If I think about that too much, I can get real nutso!”
Falling in love
“Well, do you still love him or not?” I heard one lady say this to another lady while they were waiting for the bus in front of our house and swoosh came the sound of the bus along the wet road, and it’s brakes went ‘squeal…eeeekkk” and the other lady answered — “I don’t know, I haven’t eaten turkey since he left on Thanksgiving.”
“Looking at Ally, listening to her, my stomach aches and is warm and safe all at once. My palms are sweaty. My chest, my heart, all my insides feel hot and tingling. I won’t even start to describe some of the other parts of my body — other than to say that I feel better than I’ve ever felt. I feel dizzy.”
“I can’t stop thinking about love. I’ve never been in love before.”
I dream about Ally. I am alone with her and we begin to kiss. It feels great. Even though we don’t know each other, somehow we’re in love…. “God this is beautiful” Ally says.
We sit holding each other; the morning’s first light covering us.
Ally whispers, again, “It’s so beautiful.”
“I love you,” I say to Ally. She is the first girl I’ve ever said these words to…
“I love you too,” Ally whispers back, then she pulls herself close to me. It feels as though we are blending together, I can’t tell where I end and she begins. Then Ally says, “I love you my darling.” “Suddenly, even though I know that I am only dreaming, I feel so loving, I feel so loved, that I begin to cry.”
“Hey Ally no one could ever love you as much as me!”
“For the first time in my life, I’m thinking about being loved and being known somehow going together. What if somehow, some way, I could get somebody to love me and know me? What if there is some way that I could let somebody know that I am smart and that I like my life . . .”
“I call out the words silently, from the deepest part of my heart, “I love you too…”
“My life moves across the back of my eyes, across the middle of my ears and everything I’ve ever dreamed, seen, smelled, heard, desired, loved, hated, been scared of, wished I could touch — I remember all of it.”
Fear & death
“People talk all the time about having some purpose, some God-given reason for being alive. On TV shows like I Survived, people who had close encounters of the scariest kind, horrible near-death events, often say, “It just wasn’t my time to die,” or “God has plans for me.”
“So what is God’s big plan for me? Why am I alive if no one can ever know me? There are about six and a half billion of us on the planet now. We are eating, pooping, arguing, sleeping, waking up, robbing banks, dressing little kids to send them off to school, reading, watching TV, blowing up things, praying, laughing, planning murders, planning families, passing the sugar or pulling the trigger on a shotgun — How do I fit into all of this?”
“I try not to think about dying, but it keeps coming back into my mind.”
“I bet condemned guys on death row feel like this, terrible, hopeless.”
“Nothingness, I thought, emptiness. My body breathed evenly, my heart beat slowly… I remember the sound of the rain, of the tires over the wet pavement…”
The saving graces of memory, dreams, and beauty
“The truth is that dreams and fantasies never last. Something like the breeze pressing against the windowpane, or some idiot on TV saying, “Love conquers all,” always wrecks is.
“Love conquers all”?
Yeah, right. Maybe not quite all, huh?”
“But our spirits are the purest parts of ourselves; alive, dead, good, bad, one chromosome too many or a few too few, these matters don’t matter to your soul.”
“Like everyone else, I tell myself what is real and what isn’t. I use words like life, death, heaven, hell, talking as if I knew what all these things are, but none of us really know — “
The wind outside the window moves the branches of the trees and the small leaves quiver lightly on those branches, as if they are waving to the world. I stare at the tree, a thick trunk, big and small branches, shimmering leaves…
. . . And for the first time ever, I think about its unseen roots, spreading out into the earth below — hidden and invisible, but every bit as important as all the rest of the tree.
“There once was a guy who, when he’d dream, could never tell if he was a man or a butterfly — I think I know what he felt like. What’s a dream and what’s real? In the end, it seems to me, that we are made up of both our dreams and our waking selves. All of us dream and then wake up, only to dream and awaken again, over and over all through our lives.
“Life is always about what happens next, or at least that’s what we feel while we’re busy living it. But what happens next is always just more life; crazy, funny, sad, hopeless, hopeful, winning, losing, being known but never being fully known.”
“I wake up in my body, tired. I never remember the actual moment of my shift back into myself from a seizure. One second my spirit is out surfing cumulus clouds or playing with the wind, and the next moment I’m back in my body again, awake, exhausted, “real.””
“Are these memories of real things or imagined ones? I don’t know. Are your dreams real or imagined? You don’t imagine a dream do you? I don’t know what’s real or what’s imagined . . . and to tell you the truth, I don’t care
Resolution; there is no ending, except at the end when only love remains
“… in my spirit, I don’t feel like flying or soaring or zipping across time and space. I feel relaxed, content. I float aimlessly; I am at peace. I think about all the things I remember . . .”
“There is an energy inside me and around me; somehow all the things I think about and remember turn to joy. Pure joy.”
“There is such a huge feeling to a sunrise, like all the universe spreads out from the light, and the entire universe looks back toward it.”
“A ton of self-pity lifts off my shoulders like a cloud of morning fog evaporating in the sunlight. A flood of things race through my mind about how my life is great…”
“Now a thought larger than the others overwhelms me, not just a thought, a feeling, a hope, something more important than anything else; I’m alive, and we live to learn and to know and to be known by others. This knowing we call love and it is all that matters.”