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The Un-Comfort Zone

The Un-Comfort Zone

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?

This article was originally published on Marc’s website on 07/06/09 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • KerouacKat
    4 years ago

    Thank You!! My world exactly, we MSers are so incredibly innovated and resourceful on our “home turf” that most people would think that we can be that way in other environments!! I have my “command center” where most items that I need are at my finger tips, my biggest supporter, of whom I am so grateful for is my husband of 30 years. He has stood by my side through all the misdiagnoses and believed me when symptoms would come and go RRMS. I went through 4 back surgeries of which I believe the first one was a wrong dx which contributed to weakening my lumbar spine and when that surgery was said and done all the symptoms in my leg still remained and were not from referred issues in my back. Now I am SPMS and my world has become immensely smaller. I am new to this forum, there are no MS groups where I live within 50 miles. Thank You for the wonderful insight in this article. I look forward to reading others!!

  • MArroyo
    4 years ago

    Thank you for this article Marc. As always, I laugh and cry with you because you put into perfect words what so many of us experience every day. I too LOVE my power chair for the independence and freedom it gives me outside my home. We are not “wheelchair bound” as well meaning people often say (and I often gently mention that we prefer to be called “wheelchair users”). Perhaps even better, we can all be wheelchair kamikazes!

  • Sue
    4 years ago

    You’ve described it perfectly.
    I can only take that one step holding on to grab bar to get to the toilet. The shower is in the other bathroom. I have found a 19 1/2″ walker to get into the other bathroom and into the shower. I have a travel commode for hotel rooms which is moved closer to the shower. There is a way to stack the towels to stop the flood. It usually takes 2 or 3 showers to find it.
    I was shocked that LAX, The major airport in Los Angeles does not have a family bathroom. The regular ladies lounge had to be emptied so my husband could wheel me in. After a six hour flight, I need assistance.
    If we don’t travel, “the terrorists will have won”.

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