The day begins as I see her through the filter of crusty morning eyes. She’s at rest at the foot of my bed, only a shape in the grayish, dark room. My Invacare wheelchair. My body’s home.
You may not have heard of her breed. Invacare is not a household name unless you’re in a household where people need assistance to get around. I do. That’s why I live in an Assisted Living Facility (ALF). Among the non-bipedal population - people like me - some zoom around on their power scooters, like Vespa riders in an Italian street. But most non-walkers avail themselves of Invacare’s family – her siblings, other wheelchairs. They use their hands to grasp the wheels and push their chairs with arm and shoulder power. I paddle my Invacare by foot power.
I had barely survived a crushing and disabling car crash. Truth is I didn’t: I was dead at the scene. My legs and arms were broken, along with any lesser structure that could crack. My nerves and tendons were in disarray, and burns covered my body. I was resuscitated, but I was damaged goods. During the period of hospitalizations – nine months, two in a coma – the nurses jokingly referred to me as “humpty-dumpty.”
But I was reassembled. Whole. But disabled.
That’s why I don’t have the hand power to stroke and fondle Invacare’s wheels to move: my left hand is always closed, with immovable, clenched fingers. My right hand opens only partially.
We’re always together, me and my Invacare, like the song, Me and my Shadow.
And that’s how she appears to me now, in the dark of the morning - only a shadow. I need a caregiver to help me get to her.
I lie in bed expectantly, listening through the door, straining to hear the beep-beep of the caregiver’s iPod pager. Then a knock. The door is pushed open. Wearing her cheery, smiley face, her streaming hair pulled back in the required pony tail, the official, light blue, tailored, cotton blouse, and khakis (no jeans allowed, except for casual Friday), she swoops into the bedroom, and sweeps away the enclosure of my night-time covers.
My forearms are bound in braces, which I need to hold my fingers straight while I sleep. I lift my arms above me as far as my disability allows. I feel like a puppy begging to have its belly rubbed. The caregiver unleashes the hold of my braces by stripping the Velcro from their straps. I shake them loose, raise and lower my arms to revive motion. As the caregiver lifts them off, I smell the awful used-sneaker- odor caused by plastic pressed against skin oil all night. I try to lift my shoulders to have a clear view of Invacare. The caregiver gives me a helpful nudge foreward. Now sitting, I swing my legs so they hang over the mattress. I turn my head and face the foot of the bed.
And there she is – emerging from the shadowy light of the new day! The sweep of Rachmaninoff’s Piano Concerto #2 swells in my imagination! I admire her geometric magnificence: the vertical, navy, leather back; the rectangular, black, cushiony seat – an expensive Rho Hoh cushion; the circular, heavy, grey, solid rubber wheels; the curved, smooth, waiting-to-be-grasped, shiny, silvery handles. She’s all there!
Once my feet touch the floor, I take shaky-slow-step-after-shaky-slow-step until I reach her, stretch my hand to lean against her arm rest, clutch it, twist around so that I am standing with my back to her, and slowly and pleasurably drop onto the comfort of her Rho Hoh. We’re one again.
The caregiver pushes us into the bathroom for toileting, washing up, sour-breath-tooth-brushing; back to the bedroom for dressing; back again to the bathroom for bed-head brushing; into the living room for glasses cleaning. Usually, the caregiver then leaves for another room.
Thank goodness. We’re alone. I paddle her toward the computer, check the weather and read the news. Then it’s time to roll away to the dining room for breakfast.
Sometimes, me and Invacare have a chance to leave the ALF, with a human friend. We go to a coffee house together, where my friend and I converse, maybe meet other friends. Sometimes, we go to a movie; maybe to someone’s home for dinner. Occasionally, we improve our minds and spirits by attending a lecture or concert.
Traveling is difficult, for both of us. As I paddle from the building, my friend drives the car into the circular entry, parks, and holds the front door open. Invacare and me edge close to the front seat. Then, with lower body power, I thrust up from Invacare, shuffle toward the front seat, turn my back, and lower myself (it’s a stomach churning drop in bucket seat models.) Then, I put my right hand around the indoor roof handle (the “oh, shit!” bar), flex my calf muscle, push off the balls of my feet, and swing my legs onto the front floor mat – made it! I breathe hard and rapidly. I’ve had a complete workout. I’ve transferred into the car!
But my discomfort is nothing compared to Invacare’s. She remains idle on the sidewalk, staring at my bodily contortions and hearing my labored breathing. It must be terrifying to her naïve senses. My friend removes her costly Rho Hoh and throws it onto the back seat. That disrobing is the least of her embarrassments: her side rails are lifted – ouch! – and squeezed together – ouch! ouch! She is disfigured; her harmonious geometry is crumpled: her once proud wide-spread wheels squeezed together; her brakes lifted from the wheels; her seat mashed. Perhaps the greatest blow to her persona – she’s stowed in the dark, airless, bouncy cavern of the trunk. But, the worst violation is yet to come – she’ll be tossed in, banging against the spare tire or other trunk detritus. In hybrids – she suffers still greater indignity by being squished against the cold metal of the battery.
To think - Invacare endures all this for me!
Thankfully, the trip is short. We reach our destination, Charlie’s Caffeine Shoppe. Out she comes into the soft breezes and fresh air. My friend restores her geometric shape by pushing down her arm rest; he places Rho Hoh on her seat. Joyously, we move in unison again – my feet paddling, her wheels turning.
We scoot to the door, which unhappily isn’t in accord with the Americans with Disability Act (ADA): it isn’t motion controlled. So we’re forced to enter, what I’ve termed, “butt first.” My friend leans his/her backside against the door and pushes, while pulling us through. When we’re in the coffee house, foot and wheel action face a great challenge: Invacare’s turning ratio and my balletic moves are put to the test. We twist and turn our way to the “Place Order” counter -- my friend pushing, dodging people and chairs, me shifting my hips and swinging my legs, rotating on the balls of my feet, both of us maneuvering in the close confines.
I’ve discovered that Invacare exudes a certain power in crowds. People are solicitous of her presence: they stand and step back, deferring to us as we roll by; they move their chairs; and often will allow her – and me, I guess – to take their space.
Going to the movies is a less tangled trip.
Of course, there’s the transfer from the ALF to the car, with its usual discomfort and humiliation for her and concomitant guilt trip for me. Once we’ve arrived, we’re pushed to the entry door. I paddle us in and to the box office, where I look up from her seat and buy our tickets, then paddle in to the lobby to the ticket taker, then a final push into the darkened auditorium. The light from the screen (amidst the ear blasting trailers) shows us the cordoned-off-especially-for-us mezzanine.
However, I deviate from the expected behavior to remain with Invacare. I leave her alone in her special section, because I prefer sitting further from the screen. I know it’s selfish of me, and perhaps unkind, to leave her by herself in the Handicap Section, but I rationalize that if one of her siblings comes, she’ll be close to family; moreover, she won’t have to peer over my head or around my shoulders: she’ll have an unobstructed view of the screen. I hope it’s not a downer for her. After all, I assure myself, we’ll be together in a couple of hours.
I use my leg power, and climb the stairs – side stepping, one at a time. I spot a row to my liking, check with my human friend, who has been walking behind me, slide in, and ease down, holding the back of the seat in the row in front. My friend hops down the stairs to make sure Invacare is all right, and I relax, secure in the knowledge that we’ll be reunited when the credits roll.
A dinner invitation is the most difficult of our trips away from the ALF. In a home, Invacare’s mobility and my physical powers are tested to the limit. First, is going in – rolling over the raised stoop.
Once inside the house, we encounter size difficulties – passing through doors. Invacare is not overweight: according to standardized federal tables, her measurements are perfectly normal. Inside door frames are not wide enough. Private homes are not subject to ADA regulations, thus doors don’t have to be wheelchair width. We experience some minor discomfort: I have to rise briefly - again requiring calf, quad, and glute power – and stand to the side of the door. My dinner friend lifts Invacare by the handle and half carries and tilts her through.
A more pressing in-the-home difficulty is plush carpeting. For us to move over carpet is almost impossible: movement requires tremendous lower body power. I have to push on the balls of my feet, lunge my shoulders, urging my body forward. We barely move. Invacare’s wheels seem sunk in wet cement.
And that’s just going forward and back. What a job to shmooz! To maneuver between clusters of chatting friends! This kind of conversational pleasantry needs another person’s sometimes-not-so-gentle-lifting push to consummate.
Just as an automobile has its maintenance requirements - oil changes, parts lubrication, brake inspections, and other sundry fluid and equipment checks, I, too, have my maintenance needs. My maintenance department – is Fitness over Fifty (FOF.) It’s where I energize my power sources.
I wish Invacare could be at FOF, watching me work out so I’d be ready for any travel with her. But, alas, she’s banned. I have to walk. “It’s for your own good,” my trainers say – that’s what they always say when they inflict pain. I hope Invacare realizes they have our best interests at heart: they want to help me expand my musculature and improve my strength. I understand; but does she . . . ?
So, I travel alone. With cane in hand, I walk from the ALF to the waiting transport van, upward thrust into the high front seat with leg power, reach for the handle, and with biceps, deltoids, lats, and pecs all functioning in harmony, pull myself up into the front seat. That’s a workout before I even get to the gym.
So is walking into FOF from the parking lot. Breathing hard testifies to the aerobic exercise; pain in hips and legs indicate lower body exertion. Although traveling alone to FOF may temporarily separate me from Invacare, my maintenance ensures the growing oneness of our relationship.
Equipment, however, provides the best means to build power and sustain my parts. I’m hoisted on the auto rack, so to speak, and my functioning parts are mechanically tested – just like at an oil change facility.
Each piece of equipment in the gym works on a particular muscle or muscle group – building to a plateau that requires daily repetition to keep me properly tuned-up to paddle Invacare.
The leg press empowers many lower body parts. Quads, glutes, calves, hamstrings, and core are all strengthened by the forcefulness of my exertion: two-hundred-fifty pounds. Fifteen reps. Twice. I push, and push some more – harder - strengthening them all.
The leg curl polishes hamstrings: one-hundred-ten pounds. Fifteen reps. Twice.
The leg extension machine builds quads: one-hundred-forty pounds. Ditto.
Then, to maintain cardio capacity, the half-hour bike ride to nowhere.
That’s keeping tuned! Better than Oil Can Henry’s!
Pain and agony for me. But it’s done for us. Me and Invacare, arm on armrest, wheeling into the sunset - together.