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The Pale Brown Line

I need to find a way to teach productive acceptance of our conditions. I would hate to see A live a life of boulder pushing.
I need to find a way to teach productive acceptance of our conditions. I would hate to see A live a life of boulder pushing.

The author, Richard Cohen, recently described living with MS as akin to living as Sisyphus, condemned forever to roll a boulder up a hill only to watch it roll back down (http://richardmcohen.com/welcome-to-sisyphusville/). As I think about MS, rather than pondering the deliberately frustrating task of rolling a boulder all day for no result, I picture myself trying to walk the thin pale line barely visible to this color challenged dad.

On one side of the line, I see only today. Every day feels much like the last. The pain is still there to keep my foggy mind company. I take my medications to enable something akin to a normal day’s worth of activity. I do so knowing tomorrow and all of tomorrows’ tomorrows will lead down a path of increasing symptoms. Why bother? As I look at today, it seems so pointless, so like yesterday.

On the other side of the line is the sight of the distant future when I am dead and scattered in the wind somewhere. After all, the opponent on the other side of the line is Father Time, and he has yet to lose.

Somewhere in the middle is the pale brown line, just subtly different from the marble of daily experience on which we all walk. Along this line, it is possible to see the impact of the marginal daily gain. I think of it as the trail of the poo of life. With a 3-year-old, a 7-year-old boy and an eight- year-old girl with bowel issues, the juvenile side of me can’t get poo off the brain. In this case though, it gave me a new perspective.

At first all a baby seems to do is eat, sleep, and poop. Every day seems the same…for months. Then come the little changes which at first are little but annoyances. Why must every kid take off their poo filled diapers? Then comes the endless story telling to occupy a kid’s mind while they sit on the potty. Every day, it is another story, and the only change comes in the form of a different story. It’s mind numbingly exhausting some times, but it is eventually traded in for the often repeated and always ill-timed, “I have to go potty RIGHT NOW!” Some times they make it. At other times, it is back to cleaning up poo.

Still, mired in all of this poo, is the faintest whiff of progress to give hope. From a daily perspective, it often seems pointless to try. In the long-term, we are all fertilizer. It’s along the faint brown line, faded by years of potty use instead of inadvertent dumps, we can see how much we have grown.  It’s only when I can choose a middling perspective between now and the future that I get to enjoy life’s progress.

I try to think of my MS as the need to take a dump. Each day, I hope I deal with it a little better whether it is a dry erase board to remember tasks to be completed or just confidence I can overcome the trials of the day.  To ignore the MS is to create a much browner spot along the line, but to focus too much on it is to fall into the “woe is me” depression and lose sight of the line.

 

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Blindness, MS cognitive function, MS outcomes, MS stories, MS symptoms, sickville, wellville

The Chasm Between Sickville and Wellville Bridged by Imperfect Language

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I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.
I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.

We all think we understand and are speaking the same language, but I suspect words only loosely convey experience. What’s more, words seem less likely to maintain their conductivity of meaning when used to describe experiences that one or both sides have not experienced. I think this chasm of experience is part of what leads to the perceptions I see expressed on MS message boards between the lands of Wellville and the sometimes wasteland of Sickville. I encounter this gulf every time I try to explain the blindness I have experienced most often of late. We all think we know what “blind” means. Even at the disability conference at my work, they had an attempt to train people with sight what it is like to be blind. They blind folded us and walked us from the cafeteria down a hall and gave us a cane. We could use our ears and the cane to tell when hallway opened into the cafeteria. I have thought of this as traditional blindness ever since, but I think it misses other types of sensory interruptions which lead to effective blindness.

My first attempt to describe my sight interruption was years ago when I was trying to relate some of the humor that I find necessary to live with MS:

This is from my first Christmas with MS where I got together three presents to wrap, tape and paper.

First present: put present down, cut paper, fold paper, tape – tada! One down two to go.
Second present: put present down, cut paper, fold paper, ummmm where is the tape? I have not stood up. It must be within arms reach.

Why the heck can’t I remember where I put the tape or see it…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape. So I go and grab another roll to finish. Tada! Two down.

Third present: put present down, cut paper, fold paper, ummmm where is the tape? Seriously? I cannot remember where the heck I put it. Thankfully, this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done.

I saw the tape neatly stacked one on top of the other only the next morning, but for the night I just had a block. I could not see the tape.

http://thelifewelllived.net/2012/03/01/ms-humor/

This inability to recognize what my eyes saw as tape rendered me blind to it. I could still see colors and movement. I have little doubt I would have been able to read an eye chart as well as ever, but I could not “see” the tape. Sadly, this disturbance seems ever more common of late. My wife has pretty much given up on sending me to go find something that I know only by her description. “Go get the razor lubricant from under the bathroom sink” was the latest frustration. Looking under the sink, I saw the extra razors, shaving cream, cleaning supplies, etc. I could not find for what she sent me, and I suspect thirty minutes would not have helped. When I encounter these episodes, the only way I have found to work around them is systematic search involving physically moving everything until I am holding the object of my search. It is a method that works but takes a long time, especially if one counts cleanup time. The irony is I believe our youngest, K, has a brain doing the opposite of mine.

Where my mind takes in the stimuli but fails to interpret it properly, hers seems to do an exceptional job interpreting the limited stimuli her eyes receive. Where I cannot find something in a drawer, she can pick out classmates from photos, see the ground to navigate running, and even find toys amongst rubble of thrown objects in a basement. Her mind has adapted well to the point where people who do not know us cannot believe she has problems seeing. Her blindness is probably matched more closely by the cafeteria/hall demonstration at my work, but her ability to interpret limited sensory inputs gives her a huge edge over our bumbling with a cane.

Therefore, as we attempt to describe our symptoms, whether it is recognition issues, traditional blindness, headaches, spasticity, or any of a myriad of other MS symptoms we should realize the problems with the imprecise language we have at our disposal. Often what we think is obvious may miss the tiny bit of information which would convey truly our experiences, and others who have not gone through the same thing may find themselves with only an idea formed watching from afar, across the chasm between Sickville and Wellville.

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