Shadowboxing No More, Page 2

It is hard to convey how many average daily functional constraints the 300 to 600 MS patients in our central coast area have to contend with day after day. When we polled a representative sample of this community, comprising 80 MS patients and 25 full-time caregivers 2 years ago, we seem to have tapped into a despairing level of resignation. Nine out of ten persons questioned put the amount of derangement the illness was causing in their everyday lives at 90 percent—nine out of ten on a scale of ten! And the replies were dishearteningly similar, too, when it came to the ratio between the duration of the disease and the number of medications taken. No matter when MS had been identified—whether 6 months or 10 years ago—those with, say, only 2 or 3 symptoms reported themselves as having to take up to 4 to 6 medications a day, the same number as those with twice as many symptoms!

And the radical uncertainties this illness poses—its unpredictable twists and turns, its sudden disappearances and infuriating arbitrary relapses, the way it seems to play possum and then, all of a sudden, heartbreakingly ambushes you from out of nowhere—appears to leave a residue in many respondents of anticipatory flinching, a sort of ongoing background anxiety that this or that greatly looked-forward-to event, trip, appointment may have to be abruptly avoided or postponed because of a sudden MS flare-up. It represents the fear, for instance, that a crucial doctor’s appointment planned weeks in advance may have to be cancelled at the last minute since the day that it is scheduled to happen—because of the notorious up and down, Russian roulette contingencies of MS itself—may turn out to be a “bad” day, a day when the patient may simply not be “up” enough to give an adequate or accurate account of what he/she may be going through.

Telling people that MS is a disease which attacks the myelin sheath—the insulation protecting the neuronal circuitry in the body and thus can affect all the “endpoints” this circuitry is attached to—vision, motor function, cognition, digestion, elimination, etc.—is apt to get you puzzled stares. So I’ve learned to use the metaphor of a house with innumerable rooms. One day, the insulation in the invisible wiring behind the walls of this house mysteriously begins to peel off here and there, we don’t know why, causing sudden short circuits or breakdowns in the heating system, the kitchen appliances, the utility room, etc. depriving some—or all—of these areas of essential power. The shut-off may last for days, weeks, months, even years. Then—just as suddenly and inexplicably—the power may come back on.

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