Monday, July 6, 2009

The Un-Comfort Zone

Black-headed Spider Monkey (Ateles fusciceps)Image via Wikipedia

My recent trip down to Bethesda, MD really accentuated just how disabled I've become. Placed in unfamiliar surroundings, the veneer of normalcy that I cocoon myself in at home quickly comes apart at the seams.

Not that I'm waltzing around my apartment with the dexterity of a spider monkey, but I've incorporated all kinds of workarounds and improvisations into my everyday life that allow me to do the things I need to do. If I'm alone, or with my wife, beyond the view of outsiders, the fact that a caffeinated snail could beat me in a foot race has simply become an accepted fact of life. I know it, my wife knows it, and life goes on...

As my level of disability has gradually increased, though, my efforts to remain functional have led me to develop ever more elaborate choreographies. Getting into the bathroom now requires an intricate series of clumsy maneuvers. Once I've reached the threshold of the loo, my "good" left hand, holding my cane, reaches in and flicks on the light switch. Then, with one foot on the tiled bathroom floor, I hang the cane on the towel rack, and my now empty left hand grabs at the doorknob for balance. Using the knob as a fulcrum, I stumble into the bathroom, and then swing the door shut, in one motion releasing the knob and then frantically reaching towards the sink for support. My every move requires some sort of compensatory action to get around the fact that my right side is completely uncooperative, but over time, and with repetition, these actions have become more or less routine.

Likewise, getting around my neighborhood in my power chair now seems commonplace. The road map in my head is aware of which curb cuts are suicidal, which sidewalks are pockmarked battlefields, and which routes provide the least bone jarring path to my usual destinations. After using the chair around the neighborhood for a year, these calculations have all become automatic.

Take me out of the familiar, though, and I'm increasingly helpless, as our recent trip down south unnervingly demonstrated. Making a highway rest stop is now anything but restful. Once parked, I slowly and painfully unfold my obstinate legs and drag myself out of of the car. Karen pulls out the collapsible manual wheelchair we use when traveling, and sets it a step or two from the passenger side car door. Using the roof of the car for balance, I pivot and then plop myself into the chair. My fate now rests entirely in Karen's hands. I have been rendered a wisecracking blob of flesh and bone.

I confess, I detest the manual chair. The power chair can be a hoot, and as I've mentioned in other posts, I almost feel like it gives me superpowers. Karen sometimes even hitches rides on the back of it, when we're traveling long distances over reasonably smooth pavement, much to the amusement of passersby. The manual chair, on the other hand, makes me feel about as useful as a pile of manure in a wheelbarrow. I've tried to make the best of it, sometimes shouting, "Mush, mush, onward Huskies!” (much to Karen's chagrin), but let's face it, you can't polish a turd.

Once arrived inside the rest stop building, attempting to use the men's room has become an act of pathetic derring-do. As the other fellas enter and exit the facility with various degrees of urgency, there I am doing a slothlike wobbling shuffle, gripping my cane with white knuckles as I desperately try to avoid any wet spots and discarded paper towels on the tiled floor. What used to be just a quick stop for a pee is now a nerve-racking trek through a not-so-funhouse filled with potential hazards.

The same can be said for navigating supposedly "accessible" hotel rooms. In my experience, most are "accessible" in name only, having gained that designation through the implementation of mandated modifications made without any thought given whatsoever to real-life usability. The shared tile between the bathroom floor and the roll in shower is usually silky smooth and becomes a skating rink when wet, shower seats are often installed as far from the actual showerhead as is architecturally possible, and handrails are attached in what appear to be abstract impressionist patterns.

Whereas at home I know my workarounds by heart, when confronted with a new layout, my every move requires planning and consideration. Going about even the simplest task is physically exhausting and mentally taxing. Weaving between thoughts of "Hmm, should I grab the wall and then the edge of the dresser?", are internal exclamations of "Holy crap! I am an honest-to-goodness cripple!”

Away from my home base, my carefully crafted illusion of normalcy gets stripped naked, and exposes my true state of vulnerability not only to the world outside, but most disconcertingly, to me. Assuming the persona of the Wheelchair Kamikaze is therapeutic; the reality of being the "Going to the Men's Room Kamikaze" is anything but.

Still, one day follows another, and we learn to suck it up and force or fake our way through. It's incredible what a person can get used to, isn't it?

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  1. It's incredible what a person can get used to, isn't it?

    It really is. I remember when I thought changing a dirty diaper was the world's biggest challenge...

  2. Wow! Great blog. That one hit a raw nerve. It's an aspect of disability that is invisible and nearly impossible for able-bodied people to understand. That daily complicated "dance" with the furniture, the appliances, the doorknobs, the towel racks, and the funky functioning body that you have to go through to do the simplest of things. That "familiarity with the terrain" that has to be there in order for your mind to be free from a thousand calculations so you can relax a little, feel like yourself, and feel like a somewhat normal human being. As soon as I walk out of that door, everything changes. I become a fearful, helpless, cripple. When my wonderful, well-meaning able-bodied friends "decide" that I've been cooped up in the house too long by myself, they insist on taking me to a concert, or on a road trip, or something. Not to worry! We'll take care of things! They have no idea about the minutiae of my existence. (Nor do I really want them too. I want to spend time with them as "friends".) They're thinking about getting the manual chair in and out of the car, of pushing me around, or helping me up a step. I'm thinking "You're going to come with me to the bathroom? You're going to help me off the toilet seat with my bare ass hanging out? You're going to hand me toilet paper when I discover it's out of my reach? You have any idea how that makes me feel?" And on and on. Often, I have to come up with some lame excuse and they act hurt - like I don't trust them to take care of me. It's not that. I have to weigh the pleasure that I may get from the experience against: the tension that comes from being in survival mode for an extended period of time, the fear of an "accident" that could seriously affect my life if I make a wrong move or get distracted for a second or two, and being smacked in the face continually with just how disabled I actually am. Of course sometimes you DO have to get out. And sometimes things work out okay and I have a good time on balance. But more often than not, I return home feeling physically and mentally exhausted, and extremely depressed. My home is familiar and is adapted to my needs. The rest of the world is not. Yes, it makes my world kind of small, but I can be ME in it. Out there, I'm someone else.


  3. I agree with you Marc. I'm not nearly as disabled at home as I am practically anywhere else. A few years ago, well, back in 1983 or so, I could manage wheeling myself on a mile-long stroll around the neighborhood by myself, curbs and all. Now? After not using a w/c 100% of the time since 1985, I no longer have the upper body strength to push myself that far, and no more curbs!

    As for walking around my house with one crutch? I know all the sturdy places to grab onto that make it possible. Away from home, I'm also in super-vigilant mode. It's exhausting.

  4. As guys, we do have the luxury of using a hand-held urinal on road trips or even short outings. A urinal and purell and you are set.

    I use the urinal at home too. Makes life so much safer.

  5. Weel-meaning people decid I should ear out, go to a party and drink, etc., then it's avoidance of dealing and talking to the crip (and I once shone at parties)or RREEAALLY nice people talking to the crip,and me wondering how I can use the bathroom. I come home all bothered, vowing I'll never do that again. But I do. Sometimes it's good, often not.


  6. Geez, I type lousy! Think I checked but still lift errors - decide, eat.

  7. You hit a raw nerve with me. I know exactly how you feel because I feel the same way.

    It's unbelieveable that life outside of my house revolves around when and where I can go to the bathroom, and if I'll have the strength to get up when I'm through. It's one huge slap in the face every time I can't accomplish a small task and I'm driven to fight myself to succeed.

    Bestadmom (the other Michelle)

  8. Katja: I find it hilarious when people tell me how brave I must be to be able to do what I do. Brave, my ass. You wake up everyday and simply get on with it, as best you can. Brave is running into a burning building to save somebody. Figuring out a way to get from the bedroom to the bathroom without peeing yourself is necessity, not bravery...

    Michelle: thank you for your well written and insightful response. You've summed up the situation precisely. Yes, we do need to get out of the house and rejoin the world as often as we can, but the circumstances and timing need to be of our own choosing. The world outside is an obstacle course, and sometimes you're just not up to overcoming obstacles...

    anonymous: thanks to your suggestion, my wife found some portable urinals on Amazon that use some kind of gel that solidifies after use, keeping things from getting messy. I'll be using them on my next trip to Bethesda...

    kicker: seems like we are all in the same boat, huh? It's a real problem, because I do want to remain social, and I do want to maintain friendships. But I'd much rather the party come to me than me go to the party...

    best: yes, it does seem that the bathroom does become an object of obsession with us gimps. I need a rest after using the restroom...

  9. Hey Marc,

    I been using the pee bags that jell up and control odor for a couple of years. They are great I use my truck to support myself and pee away. It helps not having to worry about public bathrooms which I dispise. I can usually pee twice in bag holds a lot but don't try 3 times could get messy. These bags are my best friend love them.


  10. I went to a family reunion over the holiday weekend. The house had steps leading up to the front door. I can walk, not great though. It was an adventure. I lost my balance enough to scare everyone there. Bathroom was on a different level. Aarcyn

  11. An empty Yuban coffee can w/ kitty litter works in a pinch. (don't ask how I know that).
    Try turning on/off lights with your elbow.
    I use two canes for greater balance. Shift them both to one hand at times. Great for opening bathroom stalls as you sit there watching the people watching you...sigh...we adapt...we survive...we mush onward.
    and Marc, it does take bravery.

  12. As a single girl in a chair with no ability to stand at all, I remain held hostage at home by my bladder. Sadly urinals don't help women much!
    So much preparation is involved in leaving the house that all spontanaiety is gone.

  13. First time visiting ur blog, and fell in love with it straight away.