An Essay on Living with Multiple Sclerosis

KEEPING AN OPEN MIND

by Dean Kramer

I sometimes tend to overdo it, as many with MS do, never sure of my limits. I was influenced early in life by old "Romper Room" TV shows, and I still long to be a good do-bee and not a bad don’t-bee. I suppose this attitude ought not surprise me. Our society rewards competitive striving with material success and marginalizes those who cannot compete. I’ve been exposed to society’s drive-and-strive values my whole life, and in all that time no one prepared me for the tellingly termed unthinkable a disabling condition. I live with others on Cripple Creek and, as regards activity levels, I want what’s best for both myself and my family. It’s hard to find that balance among the uncertainties of MS. What’s "best" now may not be "best" in an hour. With its many unknowns, mostly beyond my control, MS leaves the door open for moral judgments that wreak havoc on my selfesteem. I get caught between my desire to be lauded a winner who can just do it and my fear of condemnation as a loser who, unable to run with the big dogs, must stay on the porch. The result of this conflict is that, regardless the opinions of others, I hand myself the most damaging judgments from within, sentencing myself to life in a prison of my own creation for the crime of not knowing when enough is enough.

I have a friend whose mother sensed an impending heart attack and drove several miles out of her way to return some library books on the due date before checking into a hospital. When I heard this story, I thought the woman was nuts. But often, feeling the need to sit and rest, I force myself to do one last thing out of fear I might otherwise be a slacker. An example—finished with work for the day, I haul myself wearily upstairs for a snooze. "Uhoh," I say, glancing at the stair treads, "dog hair. This ought to be swept." I decide that although I may want to lie down, I don’t really need to yet. I can do this one last thing, and I head right back down the stairs for the broom and dust pan. This is sanity, right? While in remission, I suffer the delusion that by doing as much as possible today, I can compensate for the day when I am no longer able to do much of anything. I buzz, a demented do-bee, driving myself to exhaustion. I get the groceries in, the laundry done, the clothes folded, the floors vacuumed, the counters wiped down, the dog-yard messes scooped, and the toilet bowl (for Pete’s sake) cleaned, and why? In case I end up in a wheelchair someday! If I do all this work now, no one can then call me lazy. Does that make sense? And after putting myself through this marathon of maintenance, I wait in impatient expectancy for others to show appreciation for all I’ve done. You couldn’t call the house clean, either, because it’s now filled with resentment—both mine and that of my family members.

No longer living alone, I have not learned how to pace myself. I binge on doing and then flip-flop into a self-protective refusal to budge. I tell myself that unless I keep up the pace, I’m useless. Then I feel overwhelmed by all I’ve committed to doing. I worry that others may feel manipulated by my handling of MS. No worries there! How could they not?

Fortunately, before (or shortly after) driving those around me to distraction, I’ve realized that the negative running commentary of my Inner Prosecuting Attorney is dangerous to my well-being. Although I’d learned to handle my limitations while living alone, I’m now having to learn to accept and respect them while living in constant comparison with an able-bodied person. It’s a relatively new situation and, consequently, I’ve been experimenting with some new ideas.

I’ve been paying more attention to the language I use. Take the words one last thing. I’ve always been somewhat concrete in my thinking. These days, I try to think of those words literally. If I’m too tired to sweep the dog hair from the stair treads, yet feel driven to do so, I might imagine my family gathered solemnly outside my room in the hospital. The doctor has just delivered the worst possible news. Faces fill with grief. There are tears. Then someone quietly remarks, "Well, at least she left the stair treads clean and free of dog hair." The rest of them give approving nods. This thought wakes me up. As long as I live, there will be one last thing to do (and it will, most likely, involve dog hair). I can choose to pass on the sweeping once in a while.

I’m trying not to trap myself by asking whether I need a rest or merely want one. The English language differentiates those words and considers need the more acceptable of the two. Other languages have but one word, will (as in the sentence, I will that it be so) covering both concepts. It’s relaxing to will myself a rest, no longer torn with anxiety between valid need and frivolous want.

As for the Manic Housework Martyr, I’ve come to see that others in my home have their own priorities for the use of my energy. Perhaps someone is willing to forego folded laundry if I’ll go along on an errand. Others (with four legs and fur) would probably enjoy some time outdoors with me more than a vacuumed rug. People in good health need not choose among activities to such an extent, but I’ll have to continue making choices as I ride the tide of relapse and remission with a loved one in my life just as I did when there was no such comfort. I’ve found that it furthers intimacy in very rewarding ways when I listen to the true needs of others, rather than projecting my own fears of incompetence and then trying to compensate. Instead of assuming, I’m becoming both more observant and more likely to ask those with whom I live to help me choose which contributions they’d appreciate from me.

Naturally there will still be times when I judge my limited abilities poorly and sentence myself to doing more than I can handle. There will also be times when I feel imprisoned by the misunderstanding of others regarding my MS. It’s been written, bars do not a prison make. Bars may not, but minds certainly can. I’m trying to keep mine open.

Excerpted from Life on Cripple Creek by Dean Kramer. Copyright © 2003 Demos Medical Publishing, Inc. Excerpted by arrangement Demos Medical Publishing, Inc. $18.95. Available in local bookstores or call 800.532.8663 or click here.

 

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