There I was, waiting to preboard a flight home, when I noticed a matronly-looking lady staring at me. You know the type. Too much makeup, perfume, busy floral print dress and a dazed husband. I just knew it. In a flash there she was, gushing, “I was watching you. My! You are stunning! So beautiful! Disabled and all! So successful!”
Huh? Successful? At being disabled? Twenty-seven years in a chair, I thought I’d heard it all.
Before I could give her my sweetest smile and say, “Lady, don’t make me kill you,” the boarding agent came to get me and most certainly saved Mrs. Matronly Type from being mangled. She was not on my flight but might as well have been. Her words annoyed me the entire flight. Three hours nonstop. How did she mean that exactly?
Just then Mr. I-have-to-carry-this-73-and-a-half-pound-bag-containing- my-entire-life-because-I-don’t-have-one comes down the aisle, swinging side to side as he tries to figure out where he’s sitting. If he sits beside me, he will drop his life on my head as he tries to hoist it into the overhead bin. It’s a given. I begin to pray. “Please God, don’t let him sit next to me. PLEASE! I’ll be good. I won’t say bad words or want to hurt people any more, I promise.” God only half-believes me.
I breathe with relief as Bag Boy passes me, only to realize he’s sitting right behind me. I know this because he leans on the back of my seat so hard trying to hoist his life, I do that heart-stopping jump, thinking I’m falling backwards. Right on cue, down comes the bag. On my head. “Sorry,” he mumbles and continues his task without missing a beat. Sorry? That’s it? Not, “Oh my God, I almost gave you a concussion because I’m the worst sort of bozo, shlepping my life around instead of putting it through checked baggage. I am sooooo sorry.” Of course not. I’m not sure what smarts more, my head or my ego.
The flight attendant tries to help without telling him off and tells me to move to the window seat. She’ll speak to the person who’s been sitting there. She doesn’t get to him in time, though. “He’s heeeere”–and none too pleased either. “YOU are sitting in MY seat,” he declares loud enough for the flight attendant to come running. She explains. He’ll have none of it. My jaw is hanging open for a second. I ask to be seated elsewhere. Sir Galahad here obviously left his Miss Manners book at home, on the back of the toilet, under the Playboy mags. I don’t think I said that last part out loud.
With assistance, I am transferred across the way to an aisle seat. I’m just starting to settle when the guy who sits next to me materializes just like that. He’s not thin. He has to get past me. I get to be up close and personal with his crotch or his back side. Can I scream now? I turn my knees to the side, hold my breath and tuck my legs in, to let him pass. He looks at me with contempt and proceeds to heave and lurch over me, his butt threatening to finish off the side of my head Bag Boy missed.
He drops into his seat, panting and puffing and spits, “It wouldn’t have been that difficult for you to stand and make this somewhat easier, you know.” I look into his sweaty face and as I’m about to open my mouth, the attendant is there to explain. He looks at me, horrified. “I’m so sorry, so sorry,” he pleads. Great, I have a perfectly good temper tantrum brewing and they just ruined it. But I smile and tell him there’s no way he could have known.
There is a God. Who else protects the likes of these people from the likes of me?
The drama’s over, we are airborne and I’m bored. I go back to my initial diatribe. A successful para. It’s not like I applied for the job and worked hard to be really good at it:
Wanted–Personable types for newly created positions: paraplegics/quadriplegics. Become part of the fastest growing enterprise in North America! We offer many benefits, medical, dental and we have really good drug plans! No experience necessary. Ability to sleep on toilet an asset.
Hey I can do that! You learn to be very successful at this. It’s a perk of bowel schedules imposed upon the unsuspecting at very ungodly hours.
I should have asked her to define successful.
That reminds me of the most frustrating, swearing-inducing thing that occurs to me in the bathroom. Not the schedule or the occasional incontinence, though they are the inspiration for some of my best stories. I have this habit of pulling my clothes back on while sitting on the toilet. You know how difficult it is to pull up your undies and your pants when you’re sitting on them? And the feeling when you can manage it without too many problems? And you go to transfer and almost give yourself whiplash when you come slamming back down because you slipped the toilet seat into your gotchies along with your backside?
It’s that stupid space between the seat and the porcelain that allows clothing to shimmy right in there. Boy that pisses me off. Worse, I do it all the time. Especially if I’m in a hurry. It’s worse when you do it with control top pantyhose. I nearly had a heart attack once when I had again inserted the toilet seat in them and as I transferred, the pantyhose with no give, didn’t, and the impact of my return to the porcelain knocked the top off of the toilet tank, breaking it in half on the cement floor.
Being a successful para/quad means vigilance at keeping foreign objects out of your pants.
Which reminds of the first time I had sex after a very, very long time. I was working in the city, making good money running a corporation and couldn’t speak intelligently every time our new sales supervisor came near. The more I ignored him, the more he was interested. In a moment of insanity, I asked him over for dinner. He said yes. Oh my gaaad! He’s coming to dinner! We’ll have a nice time! … He might like me! … He’ll want to kiss me! … We’ll talk! … I’ll want to kiss him! … We’ll want to do the do! … I can’t do this! I tried to back out. He asked me what I was afraid of. “Excuse me, I’m not afraid. Don’t be a foolish boy,” was my snooty answer.
Of course, my nonexistent fears came to pass. He comes to dinner … We have a nice time. … He likes me. … He wants to kiss me. … We talk. … He kisses me … I’m going to faint. … He wants to do the do … I can’t do THIS! I’ll have to take my clothes off, including the control top pantyhose! Even sans toilet seat, my carefully constructed image will be destroyed. He’ll see me naked! He’ll run screaming from the room!
We get to the part where I’m supposed to take my clothes off. I start crying. He’s gorgeously naked. I blubber how ugly and horrible my body is. He puts his glasses on the nightstand and lovingly helps me out of my clothes. Just as the fear starts to subside, he turns on the light. I swear if I can ever move again, I will hurt him. In an attempt to control the rising anxiety, I tell him this is the part where he runs screaming from the room. He tells me to let him be the judge of what scares him. Of course it turns into one of the best nights, one of the best relationships of my life.
The next day, as he’s leaving, he smiles and says, “By the way, without my glasses on, I can’t really see anything. You worry too much.”
Successful relationships demand giving yourself a break. Praying a lot also helps.
We are about to land. I think of my car parked outside, somewhere. Underground parking gives me hives. The last place I lived had underground parking. One particular brilliant day, I’d parked my car, unloaded my chair, turned to get my purse, turned back and–lo and behold–no chair. I looked up to see it nonchalantly rolling away. It rolled down the incline, over a slight hill, actually turned right, picked up speed and crashed against the wall on the far side of the garage. I sat a long time, staring in disbelief.
Finally I drove over there. Inch by inch I was able to get my car in, sort of at an angle. I opened the door, reached as far as I could without falling out. My chair is, oh, about 7 inches past my reach. Sooo. Maybe someone will come out and I can ask for help. When exactly? An hour? Two hours? Tomorrow? I’ve already been here 30 minutes and no one has come down here. I don’t think so.
I then get one of those brainstorms I’m famous for. I surreptiously remove my bra. I open the door and in the first attempt, hook the bra strap onto the footrest and reel her in. I’m successful! I can hear the crowd roar. I’m grinning. I’m an idiot. The angle I’m on does not allow my chair to pass. It has to be folded. That’s impossible. I close the door, secure one bra strap to a push handle and the other to the side mirror, put the car in reverse and back my way out, chair and all. I have conquered! Of course, that’s when all the could-have-been Good Samaritans come out. Five of ’em. They watch, puzzled, as I make my way back to my parking spot, towing my chair with my leopard skin patterned bra, a crazed smile on my face.
Being successful in such situations means getting creative. And putting your brakes on after unloading your chair is a really good idea.
This kind of thing makes me nervous. If I’m not in my chair, I can’t handle it being very far from me. Separation anxiety. One too many times, when I’ve had to transport family and friends, my chair had to be put in the trunk. And one too many times, I’m all the way home before I remember just where my chair is. No matter how many times I say, “Don’t forget my chair in the trunk,” we forget.
The first time it happened, I’d just returned from a company party and was in my driveway before the light bulb went on. It’s 2 a.m., everything is closed, and I’m driving around trying to find some nice person to help me. At 2 a.m. nice people are in short supply. I round a corner and see a guy at the service station. Thank you God. It’s the gas guy with his tanker. “Can you please help me?” I call out. He looks at me, looks around and yells back, “What do you want?” Annoyed, I ask him to come over so I can explain the situation, and he says, “I don’t think so.”
I don’t believe it. Do I look like an axe murderer? Oh, sorry, the axe murderer is in the back seat. I’m just the bait. I drive as close as possible and he backs away. “Look,” I shout, “I’m disabled, I had a car full of people and we inadvertently left my chair in the trunk and I can’t get out. I just want to go home.” The look on his face suggests that’s the best line he’s heard yet. Sure lady. The axe murderer is really in the trunk, just waiting.
I keep telling myself this will all work out and I’ll laugh about this some day. It’s just not working right now. “I really am disabled,” I try again. Stupid me, I try to prove my point by opening the door and showing him how I have to use my hands to move my legs. I am wearing a little black dress. Short, low cut. Out come long legs, in black silk stockings and spiked heels. He gives me that smile. It takes a few moments to register. Oh good, first he thinks I’m an axe murderer, now he thinks I’m a hooker. Either way I want his body. I pop the trunk open and he steps back. “For crying out loud!” I yell at him. “Will you just look in the damn trunk!” Just like in the slasher movies.
Unexpectedly, I start to cry. I can’t do this anymore. This is so ridiculous. But it works. It makes him feel bad enough because he comes over to the back of the car. Mind you, he picked up a wrench on his way there. He carefully puts his hand on the trunk. I have to be really tired or evil because I’m having a hard time trying not to laugh. I keep thinking of how I should let out a bloodcurdling scream just as he opens the trunk. It would serve him right for being such an ass. Unfortunately he might take a notion to beat me to death with his wrench for scaring the crap out of him, so with great difficulty I refrain.
I’m trying not to laugh hysterically and the tears are streaming down my face. He brings my chair around and thinks I’m still crying. He apologizes profusely, saying how one can’t be too careful these days. I put my legs and chair back in the car and thank him. He still thinks I’m crying. I need a drink.
We have landed and the guys with the aisle chair arrive. One of them looks at me and says, “Can you walk a little ways?” I feel my blood pressure rising. I tell him I can’t walk. He actually says, “Are you sure?” Oh, sure I can. I go around in a wheelchair just for the thrill of gathering sympathy. I give him the look of doom and he quickly adds, “You don’t look disabled.”
“And what does disabled look like exactly?” I ask. He turns red and can’t answer.
I realize now why we are successful at this gig we never applied for. It is because we assimilate schedules that assault our every private place. We negotiate errant toilet seats time and again and still laugh about it. We are bruised by the heartless and the well-meaning, and we get back up and start all over again, a little wiser, stronger. Because in situations beyond our control, we come up with ways and means to overcome — no matter how great our fears are. We know the alternative is worse.
We are vulnerable, stubborn, scared, proud and slightly insane in situations we so desperately want to get back to … being loved and loving, being held, touched and tasted.
We are successful when we are at peace with ourselves just as we are, and confident enough to let it shine in a society that sees us as less than.
There’s a saying: “To be successful, we have to give ourselves permission to be different.”
Well, we don’t need permission now, do we?