It could be you stopping me, the fluorescent bulbs harsh in the women’s restroom after the dingy light of the highway for more than a hundred miles, the sun barely rising behind all those clouds over the Columbia River. It could be you, maybe not the you sitting here reading, but the you quite a few years from now, speaking with a rough voice, half of your face a little lower than the other, your hair turned gray and your clothes neatly tucked. On I-84, eastbound, after climbing out of the Columbia River Gorge and onto the grasslands near Umatilla, after pulling off the road at Boardman, Oregon, in the wind and wet, you would probably do the same thing that she did in the women’s restroom, if you were in her shoes.
“Sorry,” she said as she passed me in the entrance to the women’s room. “That’s my husband in the other stall. Don’t mind him.” She was going back to her car.
Her husband was in the farthest stall, the one typically large enough for a wheelchair to turn around. There was one stall left for me. Driving since 5:15 a.m. from Portland, I was racing east to Pendleton for a conference, not sure how long the drive would be or what the weather in late October might present. Through the Gorge and on to the prairie, the roads could produce wind gusts that blew you into the next lane or ice that tossed you into basalt cliffs or sagebrush. The day before, the highway was closed due to ice and accidents. That day, the balmy winds blew gray and soggy. I was ready for a stop.
Behind the blue metal door, with the latch that left just enough gap to make me watch the door, I heard nothing from the husband next to me, and I thought about older men taking a long time in the bathroom, how my oldest brother rolls his eyes now when he emerges from a long stint. Nothing about an older man in the stall next to me made me nervous. This restroom, with cement-block walls and a cement floor, had one of those round communal sinks, like ones in elementary schools, but this one was motion-activated. Hot water and a functioning soap dispenser made me think that federal funds for highway improvements had reached out here in the last few years for retrofitting. Pleased with the mirror, which wasn’t too scratched, though it did show how tired I looked, I left the silent man in the other stall and headed back to the car.
There were only two cars parked by this restroom: mine and the older woman’s, a sturdy car like a Bonneville, gray as the sky. She was rounding the driver’s side to return to the restroom when she looked up at me.
“Thank you,” she said, “for understanding.” In her right hand were her keys, and in her left was a blue, waffled diaper, disposable, a lighter kind than the ones I had helped my sister pull up recently when she was finished using the restroom.
“Everything okay?” I said.
The woman paused, breathed a little, raised her eyes with a slight smile on half her face. “Fine,” she said. “Thank you.” And she made her way up the path to the women’s restroom and her husband in the large stall.
Without warning one Friday last March, my sister came in from pruning roses complaining of a fierce headache. My brother-in-law asked her to say his name, and when she said his name, “John,” as if the word were taffy pulled in her mouth, he called an ambulance, and in seven minutes, the paramedics called a helicopter, and in an hour, she was in one of the best ICUs in the world. No one expected her to recover as quickly as she did from the massive brain bleed. She learned to walk after six weeks, feed herself after seven, move from the bed to the bathroom in eight.
What galled my sister, Kim, the most about the sudden disability was that she couldn’t go to the bathroom in appropriate places at appropriate times. Eating pureed hamburgers and pureed pancakes and pureed apple pie a la mode was nothing compared to her discomfort when she wet the bed. She apologized profusely to the aides. Soon she learned the warning signs and asked for help. Her husband learned how to bend with his knees, lower himself to hug her, wrap his arms around her ribcage, and lift her off the bed to her feet. When she was steady on both feet, she rested her forearms on his forearms, and they did a tight dance to turn her toward the walker and the direction she needed to move. He learned how to walk behind her when she shuffled into the wide expanse of the bathroom in the rehab facility. From aides and therapists, he learned how to lower her clothes to her ankles and lower her on to the toilet seat, then step outside.
Whenever I waited outside the bathroom door with him, and heard the flush, he would wink at me, say, “That’s my cue,” and he would lean toward the door, his hand resting on the handle, say to Kim, “Darling, is it time?” And he learned how to wipe her clean, how to put the blue diaper between her legs and tape the sides around her waist, how to pull up her pants around her diaper and leave her shirt untucked, just the way she liked it.
When my brother-in-law was out of the room one time, my sister said, “No one wants their husband to change their diaper.” The process was hard on both of them although they met the necessity with equal parts charm and grit.
It could be any of us, waiting outside a bathroom stall, coming up with the code or cue for “Come in” and the polite response, overcoming the body’s instinct to grimace at the acrid smells, taking a diaper much bigger than the one used for an infant and folding it carefully, carrying it carefully, disposing of it. It could be any of us, bending down to hug our spouse or partner, wrap our arms under their arms, straighten our legs to lift the two of us to standing.
My partner and I have talked about dying, but not about disability. We’ve talked about how one of us will die before the other and how the one left behind will have it worse than the one who dies. The one left behind has all the cleaning up to do, all the memories and reminders, all the longing left in the body. The one who dies just goes. The one left stays and lives without the ritual responses, without the spark of seeing the other at the door.
Death and disability are messy, like toddlers with their toys. They leave memories and abilities in unfindable places, strewn every which way. A long disability before death shifts everything. If I were the one needing help to pee, if I had to watch my partner clean me, change my diaper, overcome the body’s revulsion when I know how sensitive she is to smell, if I knew how much my partner, Cheryl, were giving up each day to attend to my bowels and medications and mental state, I would be mortified and frustrated and angry. And if I knew I could do nothing, that Cheryl would grow thinner and more tired, her smile flatter and her hair grayer, I would experience a type of torture, something like the way a tree leans on barbed wire, the pressure making the body take in the barbed wire eventually, growing around it, adapting to the inevitable. This slow, painful process seems worse than dying.
But the woman at the rest area did not look sad. She was matter-of-fact. She moved with purpose from the restroom to the car and back. She was as steadfast as those basalt cliffs in the gorge.
It could be you taking a trip. It could be you moving through the steps of getting your loved one from the car to the restroom and back to the car. It could be you loving someone so much that you take him into the women’s room with you, that you find a way to make a dance out of changing a diaper, that you don’t mind doing what you have to do, as long as you are two together.
Rumpus original art by Mark Armstrong.