Shadowboxing No More, Page 3

For some MS patients, the fear is not only not knowing when the power shortage may strike—it‘s also not knowing where. Thus everything that goes into the normal cycle of daily functioning we take for granted—walking, seeing, standing, hearing, eating, thinking, going to the bathroom—with MS becomes potentially at risk. In today’s age of medical compartmentalization, those certified as experts in such various body systems—neurologists, urologists, gastroenterologists, orthopedists, internist, psychiatrists—frequently find themselves talking past one another.

As a psychologist, I’ve learned myself firsthand that psychiatry in particular sometimes has an uneasy time, for instance, connecting with both psychology and neurology. Thus, MS sufferers are often forced to field questions thrown at them from bewilderingly divergent medical viewpoints. They may end up trying to cobble together impromptu home-grown coping mechanisms based on brief unevenly spaced treatment sessions conducted by their constantly revolving corps of specialists. To be compelled to be on the receiving end of this sort of medical yo-yo act over a decades-long course of an illness like MS—say over 15 to 35 and more years—is enough to make any patient eventually lose hope of control over the evolution of his or her own illness, yielding up in the process not only any sense of personal autonomy, but harboring as well a bitter bottom-line conviction that nobody in fact—through the whole long obstacle course gauntlet that MS frequently amounts to—has been willing to step up and take overall responsibility for the direction and control of this notoriously hit-and-run terrorist-like malady that is punctuating—and overlaying—their lives. Moral: There is no “typical” MS patient! MS, a condition that can hit at so many areas of daily living, is truly a moving target; its only consistency is inconsistency itself.

I should acknowledge at this point, I think, that—though I‘m about to discuss some local body-and-spirit depleting instances of what we’ve come to call MS “orphans”—those whose condition has left them house-bound, socially isolated, exhausted, and often struggling at the outer limits of their waning resources, emotional, financial, familial, and physiological—there are others suffering from the same disease, who, paradoxically, are still able (with the help of a few intermittently effective symptomatic remedies) to follow their daily routines, with—up to now—tolerable levels of interference with their “normal” lives. Notice, I’ve put the words up to now in cautionary italics because where MS is concerned, everything has to be considered provisional; there is always a kind of figurative booby trap lurking in the background, threatening problematic future contingencies which any MS patient may have to confront at one time or another.

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