Lashed in place on the passenger side of our wheelchair-accessible minivan by a cadre of belts and straps and tiedowns as we sped free of the balmy Santa Ynez Valley, I could finally relax.
We'd just spent an exhausting few hours in the novelty town of Solvang, an uncanny fantasia of pastoral Denmark and Spanish California where static, ornamental windmills shaded storybook shop façades of stucco and decorative timber along streets with names like Atterdag and Elverhoy and Alamo Pintado. We'd eaten aebelskivers and pea soup from Chicana waitresses sporting traditional Danish costumes and perused row upon row of wooden clog refrigerator magnets and bells of painted porcelain, but mostly I'd taxed my feeble muscles navigating treacherous curb cuts and narrow aisles and uneven sidewalks of brick in a town that had so clearly confused the coziness of Danish hygge with Welsh hiraeth--a nostalgia for that which never truly existed.
But all that was behind me now. On the freeway, emancipated from the shackles of self-directed movement, I no longer had to worry about ramps or aisles or keeping pace; I could just be, and do so as the world blew past me in a blur of live oak and elderberry. I could savor the feeling of motion, of progress--and not the sort of progress presented by my disease, which only ever went in one direction.
I was so tired of holding still: at home, on the computer, inert. Counting time by the calendar page as month bled into month bled into the grave. I wanted to run, to fly, to escape.
As usual, I slumped forward and to the right, an emaciated arm stuffed between armrest and rib cage to augment the support of my chest belt. The bulkhead covering the passenger airbag loomed less than a foot from my unkempt eyebrows--close enough to do more harm than good if deployed. I imagined it punching me in the face, breaking my nose, throwing me into the seatbelt cleat, fracturing my skull. I kept meaning to have the thing deactivated, but the idea of making a phone call terrified me more than any chance of traumatic brain injury.
Kendrick Lamar played on the radio. Driver's choice. I glanced at said driver from the corner of my eye because my neck refused to twist any further. She'd been my partner for the last twenty years. Partner. Not wife. Gay marriage may have become a reality at long last, but gimp marriage certainly had not. Not if said gimp wanted to keep his state medical coverage.She hadn't known me before muscular dystrophy had thrust me into a wheelchair for good, but she'd still known me for half my life. She knew what I'd been. She knew what I'd lost. She'd lost things too, given them up, compromised them away. And all because of me--or some version thereof. The vital one, probably. The one full of ambition and drive and perseverance. The one I'd mourned years ago.
I loved her, of course. Always would. And she loved me too. I kept trying to convince myself that she no longer did, but she stuck around nonetheless, perhaps nourished by memories of the good old days.
My gaze shifted out the passenger window to a solitary valley oak, naked in a golden sea of invasive wild oats. As it passed out of view, I spotted another, then a third--lonely trees made lonelier by the sight of each other, and the knowledge that their roots would never touch.
The chronic decubitus ulcer above my right elbow burned against the armrest that had formed it. My back hurt. My neck hurt. My hips hurt. There was tramadol in my backpack, but I didn't like to take pain meds. Not even ibuprofen. Not because they didn't work, but because they weren't mandatory. When I skipped them, I felt strong--like the warrior I longed to be. Pain invigorated me. To avoid it was to avoid a part of myself. Any sucker can medicate away bad feelings, but it takes someone special to embrace the pain.
At least that's what I liked to tell others.
Deep down, like every honest person on earth, I knew I wasn't special. No one is. All thoughts have been thought before. All feelings felt. The only thing anomalous about me was the particular denomination of my suffering, though even that obscure sect gained 20,000 new adherents every year. Not many of them would make it to forty like I had, but enough would. Enough had. Life was a death sentence, no doubt; the only difference lay in the quality of one's prison.
I closed my eyes, felt the vibration of the minivan, the sense of momentum, the heat of the cabin.
A quick movement at the driver's seat and the windows cracked, blasting a noisy torrent of hot freeway air. Muscles I hadn't known I'd been contracting relaxed as I let the sensation play across my face and body.
In an instant, I was seven years old again, riding in the back seat of our '79 Mazda GLC with my brother. My parents were up front, not yet divorced, their bickering lost to the gale of the only available air conditioning: four open windows on the 210 Freeway. The radio murmured in the background, the whipping vortex rendering Phil Collins indistinguishable from Cyndi Lauper or Depeche Mode or Prince.
Perhaps we were on our way to my grandparents' house--a midcentury modern perched on a hill overlooking downtown that my grandpa had built by hand a lifetime earlier. I wore shoes. Shoes that fit. Shoes that I tied myself. There was no wheelchair in the back. No emergency ventilator. No urinal. Or heart medicine. Or neuropathy.
My grandma and her vibrant blue eyes would greet us at the door, clutching a plastic grocery bag from the local Lucky store filled with Sunny Delight and fruit from their trees. Fuerte avocados. Meyer lemons. Santa Rosa plums. She'd exchange this bag for my brother and I and then bid our parents adios. We'd feast on sweaty Hebrew National salami slices and Velveeta on Ritz crackers. She'd ask us how escuela was in a Chicago accent that betrayed her German heritage. We'd swim the day away, and do so without threat of drowning from muscle atrophy.
Before dusk fell, we'd deploy the foldout table on the patio, basking in a wondrous, impressionistic gloaming that stretched to the valley floor below as we chased away yellow jackets from a microwaved platter of pork ribs from Price Club. When the mosquitoes got too bad, we'd head inside to watch Wheel of Fortune and Jeopardy! on a modest TV that had no need for cable on a hill so close to the city, in a house with so much to do.
After the game shows, we'd move to the orange vinyl seats of the small kitchen banquette that had sat four generations over the years. The matching highchair that had served my dad and myself equally over the years bade its time in a corner by the stove. There, we'd cheat at card games with names like Spite and Malice, Spit in the Ocean, and Revenge, laughing all the while.
When it was finally time to go to bed, hours after my usual bedtime, when thoughts of phantoms quickened and the canary yellow bedroom my aunts had shared as children beckoned, my grandma would surround me in early copies of Mad Magazine and comics of Archie and Casper and Richie Rich scrounged from my dad's old room, the blue room, now the junk room.
I'd turn their musty, yellowed pages until my eyelids dried to sandpaper and I drifted off, surrounded by a timeless past that gave itself to all who opened themselves to it. A static world, unchanged by time, there until the sun expanded and scorched the Earth to cinders. Or perhaps longer--floating in the void, canary in the coal black emptiness of space, hurtling like the Voyager twins until discovered by sentient extraterrestrials. And if those creatures should find the yellow room first, eons before that Golden Record, what would they think of Jughead and Hot Stuff and Newman, Alfred E? If that little room were all that remained of humanity, any God of man could rest easy, reveling in its success.
At its driver's behest, the windows of the minivan sealed shut, killing the breeze and the illusion and replacing them both with the impersonal chill of modern air-conditioning. In a breath, the GLC was gone, long since scrapped for a Chevy Celebrity wagon after a catastrophic transmission failure. The Celebrity was gone too. And the car after that. And so on.
My grandma's vibrant blue eyes had long since clouded over into a thunderstorm of cataracts and diabetic retinopathy. My grandpa slept at the bottom of Lake Tahoe, his fading sentiment at one with the sediment. I could no longer wear shoes or walk or breathe overnight without help. To dive in the pool now was to die in the pool now. Or would be, if the water hadn't been drained. No one played out there but the fallen leaves anymore, their rustling scrapes a vulgar mimicry of youthful glee.
The foldout table had rusted shut and gone to Goodwill. Prince was dead. As were Lucky stores. Price Club had become Costco. Plastic grocery bags were illegal. A flatscreen now sat atop that old console TV, tethered to a cable box. My grandma needed it now. There was not nearly so much to do anymore.
My aunt, now seventy-five to my grandma's ninety-five, had moved back in to help out. Back into her old room. The canary yellow room.
Does she fall asleep to Cadbury the Butler, to Moose Mason and Midge, to Don Martin's crass cartoons? Do they play cards late at night, oblivious to the lonely orange highchair my nonexistent children will never use, sharing a single pair of reading glasses? Do they remember to cheat?
I have no idea.
I live three hours away now, and my body can't tolerate the trip. Neither can my grandma's. My voice is soft and her ears are bad, so a phone call is out of the question.
But I do know that the canary still chirps. And when they both die, before or after my own passing, and the house is sold, though the room be painted something trendy, the floor switched to sustainable hardwood, walls blown out, it's spirit will linger, perhaps at the hour when thoughts of phantoms quicken and eternal bedtime blooms.
GOLDEN STATE has been previously published as "The Quality of One's Prison" in The Delmarva Review.
Brian Koukol, raised in the suburbs of Los Angeles, now makes his home among the salt breezes and open spaces of California's Central Coast. A lifelong battle with muscular dystrophy has informed the majority of his work, which is written with the aid of voice recognition software out of necessity. His words have appeared in such varied places as Wordgathering, Speculative North, and The Baltimore Review, and can also be found in his recently published collection, Handicapsules: Short Stories of Speculative Crip Lit. Author website: www.briankoukol.com, Twitter: @BrianKoukol